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147426 tn?1317269232
What I Went Through to Get a Diagnosis
Hi, I'm Quix.  This is my story of finally getting a diagnosis of MS.  If you have been worked up for MS and have a diagnosis - Whatever that dianosis is - Would you post below and add your story?  Thank you.

I  am a 55 year old, white female. Seven years ago I was hit by intractable vertigo and, despite being treated by one of the world's foremost experts in vertigo, was forced to retire from being a pediatrician. I had very complicated problems in the inner ear on the left. But, eventually the problems spread to my right ear also. I was diagnosed with Autoimmune Inner Ear Disease. I was almost bedridden for a good portion of the first 4 years suffering from daily dizziness, nausea, poor balance with a lot of falls, and the worst fatigue I had ever sufferd. Remember I had trained in a huge county hospital and regularly spent 36 hours straight on my feet. The fatigue with vertigo is worse!!

Two and a half years ago one morning I was putting on my shoes and socks and realized I couldn't lift my R leg onto the other to put on my socks. I could barely lift it off the ground. I saw my internist who noted pathologically hyperactive reflexes on both knees and ankles, weakness of the R hip flexors and referred me to the neurologist I had seen before for migraines.

The neurologist who I already knew thought I was a crock, examined me and found mild extensor spasticity in my right leg - mainly at the hip. He sent me for an MRI w and w/o contrast of my brain and spine. Next visit he said the MRI's were completely normal. There was an UBO (Unidentified Bright Object) in the brain, but that this was inconsequential. He said it definitely wasn't MS and that I was too old for it anyway. He sent me home. Dx Vertigo and Spasticity- mild.  Later I discovered in his notes that he thought I was faking the weakness.

During the next year I was dieting and lost 50 pounds slowly, but developed intermittent urinary incontinence. (losing weight is supposed to help that!) I also became much more fatigued than I was before, but wrote that off to being so deconditioned by spending all day in my recliner. Also, after years of living in the desert, became severely sensitive to even mild heat in my apartment. It made me weak and irrationally irritable. I was trying to get in short daily walks.  One day it was a little warmer than usual and I couldn't make it home due to sudden weakness in both legs. I was terrified, and a neighbor had to help me home.  Some months later I had a couple weeks of a weird sensation of warm water running down my right thigh. It would happen off and on all during the day.  Each time I was sure I was being incontinent, but nothing was there!

I went back to the neuro a year after he had seen me before. He repeated the MRI and did the complete battery of blood tests for the causes of myelopathy (disease of brain and spinal cord) Again the MRI was normal and so were all the blood tests. He appeared annoyed by my return to see him. He called me and asked "if I WANTED a spinal tap." This was implying that I was faking the problems and just wanted to get medical procedures. Yeah, right...

Last summer (2006) suddenly one day I could not lift my right arm even to touch my throat. It was completely useless for about 36 hours, got a little better over the next week, but still felt weak and so fatigued. When I tried to use my right hand it felt foreign as if I was trying to use someone else's hand. It slowly improved over the next couple months.  Even so I was left with residual weakness at the shoulder. Meanwhile I'm dragging my right leg, because it never got better and lurching about like a drunk sailor. So tired that I stopped leaving the house.  My sister came to live with me, because I could not handle the house and errands. I became seriously depressed.

It was several months before I could get my mental strength and courage to research my own problems. My self-esteem was non-existent. By the end of 2006 I knew the only neurological disease that fit my symptoms of weakness, spasticity, parathesias, bladder problems, fatigue, heat intolerance, and the now two attacks of problems that came, stayed and then slowly resolved was MULTIPLE SCLEROSIS. All the other possible entities had been ruled out (this is critical in the daignosis of MS if the findings aren't perfectly classic) The problem was that my MRI was normal and I was too old at 54. You can suspect MS, but you cannot diagnose it without at least 1 brain or spine lesion on MRI.

I went to the MS Society website and looked for MS specialists in my area. I found one, made an appointment and my GP was very agreeable to making a referral. The new neurologist was wonderful! Intense, smart and thorough. In retrospect he made the diagnosis of MS on that first visit. He stated that calling the spot on my MRI a UBO was laughable. It was classic for an MS plaque (well-circumscribed, oval, perpendicular to the ventricles ). He was also stunned that my other neuro had not pushed hard for a spinal tap. That is the next step when the MRI is not diagnostic. He prescribed Provigil for the fatigue (miracle drug for me) and repeated another MRI of brain and spine. He also ordered the spinal tap which I had under fluoroscopy guidance. It was absolutely painless and without complications. Those MRI's didn't show any definite new lesions, but he was very suspicious of two little areas on my cervical spine.

The tap was positive for an elevated IgG index and I had only one (of course) oligoclonal band. They like to see 2 or more. The cell count was lost!

Based on a physical exam which showed a huge amount of existing spinal cord disease, a single plaque on my brain, the normal blood work up for myelopathy, and suggestive findings on the spinal tap he made the diagnosis of MS. He said it wasn't a "slam-dunk" diagnosis, but he was at least 90% sure. He, and many opther experts in the field, feel that for many people the MRI machines are just not sensitive enough.  They improve every year or two. His concern was than in just 2 years, I was already very disabled. I've had intensive physical therapy and still required a brace on my R leg and I need to use a cane. The disease was/is progressing fast. He put me in the category of Relapsing Remitting only because if I had a progressive type I should have many, many more brain lesions, but my disease is acting more like the rarest type called Progressive Relapsing.

In my reading late onset MS is often marked by faster progression of disability and more by motor dysfunction than by sensory problems. This fits with what I have had.

So this was my short course to diagnosis. Not nearly as horrific as it has been for many of you, but it has been devastating to me. The scary loss of function, the not knowing why, and the anger at being dismissed and discarded by my doctor. Ya know, the vertigo had been quite enough....

I'm now two months into therapy with Avonex.  I'm through a new relapse (my fourth in the 30 months).  A repeat MRI of my C-spine and T-spine with one of the newest generation of MRI machines which has a more powerful (3 Tesla) magnet showed half a dozen old spinal lesions which were missed by the previous older machines.  I'm having constant electric shocks down my left leg when I flex my neck.  Dozens of times a day.  It's called L'Hermitte's Sign, and it is common in MS, but new to me.  It is felt to indicate upper spine lesions that press on normal nerves when the neck is flexed.

So I, too, am a Stanger in a Strange Land.  I hope that here on the forums I can learn from you and share some of my understanding of how things work from 23 years in medical practice.

Quix
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Avatar universal
I started having my issues in 2000 a couple months after running a marathon.  Constricting feeling in upper left arm with my hand shaking.  Went to the doctor and was told to lay off the caffine.  When ever I would run after that, I would get about 40 minutes into my run and would get blurry and double vision.  Brought it up to the eye doctor during routine exams and he really didnt say anything about it.  2004, I had run a 18 mile race and got a cold right after.  Then the arm pain came back and numbness.  Then came the eyes, shaking right hand drunk like feeling, stumbling, vibrations in my legs.  All went away about a month later.  That it was my cold but the arm pain stayed.  Had an MRI of my shoulder thinking it was a pinched nerve.  All was fine.  2005 same time of year, same issues.  I ignored it.  2006, same time of year, this time went back to my doctor.  Got an MRI of my brain. Doctor told me it was clear but I needed to go to a Neuro.  Went to see him.  He said it sounded like MS.  (I am 34) Wanted to do another MRI of brain, neck, and spine.  My referral didnt go through so I went back and saw him again to make sure my referral would go through for my MRI's this time.  (one month ago).  He said how he thought that it was still MS.  I had had 3 attacks with this  year.  He also said that my first MRI the was a little spot.  ?????  Doctors drive me NUTS!!!!  So, Oct 31, I will be getting an Evoked Potential Test.  Nov 6 I will find out the outcome of the MRIs and EPT.  I have kept a log of how I feel and what I eat everyday.  I noticed my systems would come on with heat,stess, and illness.  My attacks were always during Nov/Dec.  These are months that are stressful, my diet is poor, and I am racing and spending a lot of time on the treadmill heating up.  I had an attack in the summer that was induced by the heat and stress.  I have found some things that help.  I continue my running for 30mins a day, yoga, I take a cool shower in the am, and one in the pm before I go to bed.  I also started a gluten,yeast, sugar, milk free diet.  I started that during my last attack and within days I felt better.  It was from a book Healing Multiple Sclerosis.  I got really tired of my doctors.  Mixed information, not putting my referrals through, and having a hard time getting appointments.  Dont know about you guys, but if I make an appointment with my neuro, it is for the following month which my attack is usually almost gone.  My left hand now goes numb sometimes during an attack.  I have a ball that I concentrate on squeezing when it is like that.  It does help. When I am just too dizzy, I do the yoga.  At least it all makes me feel like I am doing something proactive.  The diet I think has been the biggest help.  I have been on it almost 4 months and havent had any issues.  If you are interested, look up some other studies about gluten and MS.  I found that what it boils down to is ways of reducing inflammation.  I sometimes feel I what to know what this is.  And other times I feel, does it matter.  I am sure there are some drugs that help and have improved peoples lives but I feel I am not to that point yet were I have exhausted all my options.  I loved all your stories.  Some of you went through much harder times and I feel for you.  I see I am going to have a tough time with doctors.  I did not know you can get your medical records and films?  Should I be demanding these?  
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297366 tn?1215816651
Hello, I just found this site and it looks very helpful. I"m not sure that this is posted in the correct place, but feel free to move it or inform me if I'm wrong.

I am 48 and have been having strange symptoms for about 8 years. I was working at a very high-stress job and would notice that my foot would get numb after a stressful meeting. I shrugged it off until it started happening in both feet. I could feel things, but my feet and then my hands would get tingly and numb (like coming out of novacaine at the dentists) halfway up my legs and arms. My PCP sent me to a neuro who did all the blood tests to rule out the many other diseases, and an EMG which was normal. I had a MRI with/wout contrast and it was clear. He told me that lots of people have numbness and not to worry about it.  I blew it off and went on with life. a couple years later, it started bothering me again. My doc thought it might be Lupus, so off I went to the Rhem dr. who did a complete workup and told me I was fine. Hmmmm.  About six months ago, I noticed that the back of my lower legs had a perm. purple mottling on them. My doctor told me it was Livido Reticularsis, which is indiciative of an autoimmune disease. He thought that it was likely related to all my other problems.  Over this period, I had noticed a great deal of weakness in my hands. I had a hard time opening jars, dropping things, etc. The joints in my ankles and wrists bother me alot. Also, my short term memory is very bad, I have lost my ability to multi-task, and my cognitive abilities are noticeably reduced. I used to be a Advertising Exec.--I could never do that work again. I can barely remember my appointments! About three months ago, my hands suddenly became much worse. I had almost no ability to pinch my fingers together, or use them in a meaningful way. My balance became terrible and I was dizzy with a buzzing feeling in my head. My feet and legs felt very heavy, and I trip frequently when walking. I tend to drag my toes now and then. I had to touch the walls in the hallway to walk, going upstairs was diffcult, etc. I felt like I walked like Franenstein and my husband jokingly told me that I sometimes looked drunk. I went back to my doctor who did the neuro exam. My right foot reflex was bad (Babinski's?) and right leg was a bit stronger than normal. I failed the "walking the line" test badly. He tells me that I have something neurological going on but he has run out of things to test for. He believes that I am ill though and sends me for another MRI with/wout. He thinks I probably have MS. The MRIs come back clear. My blood work had a few little weird things, but not of consequence.  It appears that they have ruled out all the other nasty diseases that could be causing my symptoms, but since my MRI is clear, no diagnosis. My doctor tells me not to be in a hurry for a diagnosis, but it's driving my crazy not knowing what is wrong with me. Perhaps it can't be fixed, but what if it could be? So, I'm eating a very lowfat diet filled with natural, whole foods, resting, and trying to keep away from stress which sends me into symptom land every time.

Any ideas, input would be very welcome!

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307874 tn?1242759398
This is great info also!
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147426 tn?1317269232
Some of the stories from members of the forum on getting their diagnoses.  It can be reassuring to know that others have gone through the same thing you are.  Quix
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333672 tn?1273796389
My problems seemed to start in spring of 2001 (although in retrospect there was probably something going on before then). I had a really bad case of strep throat--I was out of work for a week and by the time I dragged myself to the doctor, they gave me antibiotics both as a shot and pills. I felt exhausted and like I had some sort of brain fever. When I was recovering from the strep, I started getting tingling in odd places, like my feet or the backs of my knees, for no reason.

When it didn't go away after a while and I couldn't keep ignoring it, I went to the doctor who sent me for an EMG and nerve conduction test (normal) and then to a local neuro. The first thing out of the neuro's mouth was MS because of my age (31 at the time) and gender (female), but when the MRI's (brain, cervical and thoracic spine) came back normal, he said it wasn't MS, but idiopathic peripheral neuropathy.

It kept gradually getting worse. Feet became somewhat numb all the time, some burning sensations, spread to calves, got tingling in scalp and face, fingers numb and clumsy, some numbness in arms, eventually thighs. Mostly tight or pressure-y sensations and numbness; knees and fingers feel stiff; legs feel hard. Sometimes tightness in abdomen up to ribs. Lack of coordination and I feel like I am weaker (although this doesn't seem to come up on the tests). My balance has gotten worse. I've fallen occasionally when not paying attention and have to hold onto the railing when going down stairs. I get tired easily and have less endurance.

Except for one incident several years before the strep throat (which was sensory and seemed to resolve completely), I haven't had anything that I would call a clearly-defined attack or remission. The symptoms wax and wane a bit, but nothing happens suddenly and things seem to be gradually getting worse. I can't remember anymore what it was like when my legs and hands felt normal

Anyway, the local neuro didn't seem to think anything was getting worse based on his exams so after a few years I got second opinion from a neuro at the nearest university. The second neuro also said idiopathic peripheral neuropathy, probably autoimmune, and not likely to get worse.

Except I felt like I was getting worse, like the frog in water that is slowly being boiled and doesn't realize it until it's too late to escape. Over time I sort of vacillated between denial and panic. In one of my more panicky moments last June, I went back to the local neuro who told me I had "hypersensitive nerves" (which for all the world sounds like some sort of 19th century women's hysterical disease, although I'm not sure that's what he meant) and my exam was in the "normal range." He said he could send me to a specialist who would do all sorts of expensive testing for genetic conditions that can't be treated (which he implied was a great waste of time and money) and gave me the impression that I should stop making mountains out of molehills.

On the web, I had come across a place that specialized in peripheral neuropathy and  thought that was worth a shot because the idiopathic thing drove me crazy and I couldn't reconcile my subjective experience with what I was being told about "it's not getting worse and it's not likely to get worse." I went back and forth over this--after all how many doctors do you go to see just to have them tell you the same thing before you believe them? In the end, I got an appointment with a PN specialist in August who said first we had to show that I had peripheral neuropathy (at the time I thought the alternative was some sort of psychological problem). I had an exam (I don't know if this neuro thought I was normal or not), a normal EMG, and then a somatosensory evoked potential (SSEP). The SSEP as I understand it measures the speed of the nerve signals from the time they hit the central nervous system (spine) until they reach the brain. Anyway, this was abnormal (legs and arms) and the neuro told me I had a problem with the central nervous system and he didn't think I had peripheral neuropathy at all. Despite the fact that the central nervous system sounds much worse, I was stupidly happy just to have something objectively proven wrong, especially something that jibed better with my experience.

After that I had a brain and cervical spine MRI. There were three non-enhancing lesions on the spine. The brain report came back clean, but my neuro looked at the pics and said he thought there were two "small spots." I then had a spinal tap, which was positive for 13 o-bands. I also had a slew of blood tests, etc., which were negative.

So the PN neuro sent me to an MS neuro, who concurred that I have MS. And that's where I'm at now.
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209591 tn?1267418314
Problems with the following:

* Memory – if I do not write down reminders I will forget to do things, half the time, I forget about the reminders.
*Concentrating – I find myself drifting off into la-la land during ANY AND ALL situations.
*Thinking clearly – over medicated??????
*Dressing, can only dress while sitting down, unable to pick legs up, but so far off the ground
*Walking – depend too much on right leg, tire and cramp easily, unable to put much pressure on either leg, even less on left leg, have to stop and rest after every 15 – 20 yards (EXPERIENCE EXTREME PAIN AND FATIGUE)
*Difficulty falling asleep, urinating, swallowing, picking items up, gripping items, buttoning attire, standing *Harder time will small muscle activities, such as turning pages in books, opening jars, wrappers, etc.
*Doing Daily Tasks – items that require little or no common sense, mailing items, organizing things such as appointments, labs, and DIRECTIONS (especially oral).
*Difficulty coping with STRESS, HEAT AND NOISES!!!!!!!!!!!!
*Inability to feel when injury happens

Other symptoms include:

*Burning pain (in muscles) – moderate to severe, lately severe
*Pins and Needles Feeling
*Numbness
*Decreased Muscular Control
*Stiffness – PT has really helped this, for days after pt, I feel less stiff...stiffness makes is hard for me to dress
*Swelling – worse in back, feet and legs
*Fatigue (Mental & Physical)
*Malaise **** – A daily problem with me anymore, I do not know if it is because of depression, the pain, weakness, or the abundance of medication I am taking.  
*Depression – taking Nortriptyline 50 mg and Cymbalta 60 mg daily
*Headaches – (Migraines???) worse around loud noises and bright lights
*Irritability & Anxiousness
*Tingling Sensations (allodynias)  – for example during bathing, walking, sitting...anytime my leg is near movement or I put pressure on it, worse with my right side?!? Worse when laying down or when putting pressure on the right leg, foot or knee
*Low Grade Fever, results are hardly ever under 99.6
*Shaky right hand – Intentional tremor ???
*Proprioception – loss of position sense – I can barely tell where my leg is placed if I am not directly looking at it.
*Major Cramps and Painful Spasms (severity worse than Charlie horses)
*Dysesthia – Inability to feel when injury happens, for instance I can get cut, scratched etc, and not feel any pain, that is unless I see it
*Chronic Urinary Tract Infections – from urinary retention????
*Feeling faint and dizzy when rising from a sitting position
*Bothered by noises and lights (Could Anti-Depressants be causing this?)
*Back pain
*Muscle weakness – Especially in extremities
*Dystonia
*Symptoms severity increased with heat
*Body can feel heat or burning without any apparent heat near body (sense of touch may be replaced by feelings of numbness or tingling. Parts of your body may feel burning or cold, even though there is no heat or chill present.)
*Constant state of tiredness – inability to complete most tasks –  moving or lifting items, exercising,   walking, carrying grocery, brushing hair, etc.
*Extra tension in arms and legs with usage.
*Chronic Indigestion
*FRUSTRATION
*Positive Babinski Reflex (only in right side)
*Inability to feel and recognize touches, unless they are visual
*Spasticity -- Increased a great deal in the last month
*Thickening of the skin -- Increased greatly in the last month

I am currently being seen by a Neurologist, having MRIs and Spinal Tap done.  I am so worried about the spinal tap, I have almost decided not to do it, what can help me decide to do it?  What disease would you be more worried about?  What would these two tests help to determine?
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I was dx in 2003, after 12 years of multiple tests, multiple diagnoses, a lot of money spent on specialists and nothing was working.  I remember that when I was in my teen age years, I was very clumsy and often would have a bout of double vision or no vision at all in my left eye.  The doctors said that it was hormones activity.

I am a very hyper human being, but this was slowing me down.  In 2003, I wss completly paralized from the waist down, and with help from angels, went to see my neuro who diagnosed it as a pinch nerve in the lower back.  Sent home with painkillers, but nothing worked.  After having 12 years of tests with normal signs and visiting 6 neuros, one of them iss supposedly the best MS physician in the island, not for me.

I work in a place where stress is contant, needless to say, I have many relapses, been in the hospital about 4 times with steroids and started using Avonex three years ago.

I finally visited a young physician (neuro), who listened to what I was feeling and not only that, she finally diagnosed me relapsing remitting MS.

This year has been very active in relation to relapses,  I would have one every three months.  Back to  steroids intravenously and a lot of medication for balance, fatigue, PAIN and most of alll, my left eye seems to run my entire body.  It has always started with double vision, I had have to wear eye patches for several occassions in order to lead an almost nomal life.

I have been fighting with monster for so long that I am tired of being sick and trying to cope with everything else involved.

I always say that the Lord knows why I have this disease.  I think that it is a humbling experience so that I would know that I am not alone in my quest for a healthy life.  There is always someone who is worst than what you have, so life goes on.

By the way, I use a cane constantly because of my double vision, tremors and spasticity.  I had a prescription for a motor scooder, and it is sitting in a corner of living room  I know that if I start using it on bad das, I would be using it very frequently.  I do not loose my faith and hope that a cure will be found soon,

This is my first time writing in a forum, I hope my story can be of help to at least one person.

Good luck every with whatever treatment you are on and do not give into the disease.  We have MS, but MS does not have us.

Gooddays

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147426 tn?1317269232
We are honored that this forum motivated your first post.  You have been through an amazing ordeal and I can only imagine your relief when someone finally put a name to what you knew was wrong!  I don't know if you stumbled across us or if you have been reading along.  But, the secondary focus of this forum beyond MS is the horrible and unbearable time between knowing that something serious is wrong and finding a name for the enemy.  A great number of us struggled for a long time for real information and for the name. Many are still stuck in that Limbo Land.

Thank you for adding your story.  Your strength is inspiring and your story needs to be told.  If you would be willing, would you tell your story again, myabe adding your age and some of the testing you had through the years that failed to give you an early answer.  If you would go to the main post page on the forum, by clicking on the blue button (Back to Forum) at the bottom of this page, the choosing the blue button near the top (Post a Question).  You can cut and past what you have written here, or tell us another part or whatever you choose.

You will help far, far more than one person.  There are dozens who post here who still lack any knind of diagnosis and fight the despair that comes from not knowing.  For everyone here I suspect there are 100's more who read, but don't write.  

Thank you again, and I pray we'll see more of you on the forum.

Quix
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147426 tn?1317269232
This is our ongoing thread of the complete stories of those of us who have diagnoses.  I'm asking that everyone who is willing add their story.  ALL the stories are important!  They give us a lot of our common ground.   They give those people without a diagnosis hope and show them that often an answer needs perseverence.  There are a lot of people missing from this list, so get to it!

At the start of this thread I ask for people with a diagnosis of MS.  That was short-sighted of me.  The story of suspecting MS and getting another answer is every bit as important.  So, let's hear from "everyone WITH a diagnosis."

This thread was started a few months after the forum was created, so it gives a little of our history.  MedHelp is blown away by the quality of the people and their interactions on this forum.  Reading this, you can see why.

I hope to see a lot of additions.

Quix (Momma Bear and Den mother)
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335728 tn?1331418012
Limboland from He**...that is what some call it.  I was diagnosed with MS in 1993 after presenting with Grand Mal Seizures.  I was started on the anti-seizure medication and have been seizure free for about 11 years.  My disease, I have been told, was in remission ever since.
In Feb. 2007, I was diagnosed with Paratrigeminal Neuralgia which is related to the brain but has no association with MS, so I have been told.  In June 2007 I began having difficulty with pain in my hands and legs, paresthesia, vertical double vision, slurred speech, difficulty with word retrieval, nerve pain in my heels and swallowing issues.  The” MS Specialist” that I saw from Feb. 2007 until Nov. 2007, had a CT Scan done, x-rays of legs and hands and an MRI of my spine and pelvis which was due to pain I explained to him was due to a lumbar strain.  He was sure that there “may” be a tumour and therefore insisted on it...”it” cost me $1150.00 and all tests came back normal.  He constantly referred to the CT Scan that he did in Mar. 2007 as an MRI and we couldn’t explain to him that he was mistaken...in his mind he never is mistaken.
In November 2007, I was struck with severe vertical double vision.  I went to the ER and a CT Scan was done...normal.  They took blood to test for the levels of medications...high normal.  I was sent home and told to call my neurologist.  I called the “MS Specialist” and was told to try to see my G.P.  and have her try to get my “emotions” under control...I was essentially being called a hysterical female for going to ER about my vision!  The vertical double vision lasted 10 days, on the 11th day I finally was seen by my “MS Specialist”.  He began searching through my file, I asked what he was looking for and he responded he was looking for my MRI report!  He had not done an MRI in the time I had seen him from Feb. 2007 to Nov. 2007.  He ordered one and miraculously I was able to get one in 3 days and my healthcare paid for it.  I received a call from my “MS Specialist’s” NURSE,  two days later...my MRI is positive for MS and I was advised to obtain a second opinion!
I had an appointment with a new “MS Specialist” in Dec. 2007.  I went in very hopeful...that hope was squashed very quickly.  This “MS Specialist” very quickly determined that the symptoms I am having are due to being over-medicated by the last “MS Specialist” and if they get my medication under control I will be fine.  She has stated that “your disease is inactive and therefore I am not going to start you on the Disease Modifying Drugs.”  I am still on medication for my symptoms and have tried Tegretol, Topamax, Neurontin, Percocet, Oxycodone, Lyrica, Amitriptyline and next on the list to try is Cesamet.  I am told that my symptoms are not related to my MS however they do not know what they are related to.  I have an appt. to see a Rheumatologist.  I am to have neuropsychological evaluation.  I have been told to apply for a disability pension and the reason for it has been stated as MS and Fibromyalgia.  My disabled parking application was filled out by my G.P.  stating MS and Fibromyalgia as the reason for needing it.  HOWEVER, my disease, they keep telling me,  is inactive???  
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Thanks again for finding this thread and bumping it up for me:o).
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400099 tn?1282958464
I relize now that I had my first symptom in about 1985 when I could not stand one day and was stuck in a chair for about 3 hours. Then, for weeks after that, my legs felt like lead. GP told me it was nothing and if I stopped smoking it would go away. That was the general pattern for a long time. Dizziness, tried treating me for anxiety. All the male docs I consulted assumed it was stress. Until 1995, my then doc sent me for an mri, but it was clear so he dx'd me with fibromyalgia. Then in 2000 was dx'd with a vry rare autoimmune kidney disease. Last year switched to a wonderful woman doc who on the first visit, knew I had lupus. Sent to rheumie who confirmed it with blood work. In July, had episode of horrible eye pain and numbness right side of face. Doc sent me to er incase of stroke. ct scan ok. Happened again.

My daughter and I were watching mystery dx on discovery and detailed a woman who was dx'd with lupus and turned out to be ms. Next episode of numbness in face went to doc and told her about the show. She said, "You do have a lot of symptoms of MS" and sent me immediately to neuro. He ordered MRI. Didn't expect MS because I was 51. Surprise.

My MRI: "white matter lesions that were at least 0.5 cm in diameter, often more, and that were perpendicular to the long axis of the ventricles. They also involed parts of the corpus collosum"

I saw it and it looks like swiss cheese. I am high chemical sensitive from the kidney disease, so I can't take provigil, or other stuff that goes through the kidneys.

Symptoms: I use a cane, I get dizzy, walk slow because afraid of falling, burning in all different parts of my body. Awful pain in lower back, legs and feet. Ear pain, my eyes are getting blurry. When under stress, my speech slurs and not unusual to lose words. When I gotta go....I gotta go. My hands and feet swell with the heat. I drop things. I get what feels like one huge muscle cramp from my mid back to my ankle that is excruciating. Forgetfullness, heat intolerance, etc.

I go for a follow up MRI next month.

Am on copaxone for 4 months. Don't see a difference, but I may be in secondary progressive now.
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I am a 25 year female, and really want someone to let me know what they think.

I am in the midst of that 'strange land / limbo land' that is spoken of. In May this year (2008), one day i woke up with a numb L big toe. Thought nothing of it. 4 days later, sitting on the couch, was feeling it and realised it was now in my second toe too. The next week i went to my GP who unintentially 'began my deteriation of my once strong mind into a depressed and pessimistc state'. This week i started to get weak muscles in my left side.

Neuro app came, MRI apparently normal from the report by he said there were some very questionable areas but not to worry about it. "It is a virus which should get better soon"

The next 2-3 months, I started suffereing from virtigo. I would be watching TV and could follow the movement of the screen properly. I had constant burning sensations in my legs and arms, pricking sensations all over my body, very achy muscles in legs, extreme fatigue.

I heard that ppl with MS are heat intolerant, so to test this out, ran a very hot bath. That night was awful, couldn't raise my arms properly and felt generally sick. VERY ANXIOUS

Numbness never went away, in fact still numb now. One morning i woke up with L side of body numb, including inside my mouth. Lots of muscle twitching, including my tongue which was strange.

Last month, i was so depressed, i couldn't cope with going to work as i was adement (and still am) that i have MS. Crying all the time. Mum was upset about this one night and rang GP for advice. Got into the same neuro again in the next couple of days.

Neuro thinks i'm crazy. I real feeling that he thinks i'm making it up. Ordered another MRI, LP and evoked potential.

This was 2 weeks ago, LP normal, evoked potentials normal, 2nd MRI came back with a report saying i had 10 insignificant T2 lesions on the brain (not typical of primary demylination) and a possible subtle high signal of T2 hyperintensity on the spine, but not a definite finding. Neuro still thinks it is a virus (which one i dont know) and is telling me my anxiety might be causing the symptoms. By this stage symptoms eased and i felt ok however this week starting to feel prickling sensations again and burning sensations.

What sort of virus is he talking about?? Does anyone know?? What does everyone think i should do?

PS - i'm going for a 2nd opinion in 3 weeks.

Belinda

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572651 tn?1333939396
I found this thread when I was looking for something else - I hope all who are dx'd will take the time to add their story to the ones already here. I promise I will work on mine, too! :-)

This is well worth the read so you know you are not alone.

be well,
Lulu
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I wish I had seen your post about the Mayo Clinic before I wasted my time and money.  If you want help, that is not the place to go!
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1993246 tn?1327002066
I have just come across this forum, whilst reseraching how to get a diagnosis.  I have suffered with migraines all my life and approx 2 years  ago began to have regular headaches evey day.  These were not my usual migraine headaches although I was sensitive to light have numbness in my face and disturbed vision.  I am a teacher and tried to persevere in going to work and dosing up on painkillers.  I found I was extremely tired and had strange sensations down my left side.  I went to my Dr in Easter holidays and he prescibed me stronger pain medication.  I saw him regulary for a couple of months.  At one appt. I was exhibiting the symptons and he sent me to hospital to a mediacal assessment unit.  Here I has a CT scan and a chest X-ray.  The CT showed I had more fluid than usual but not abnormal and chest X-ray clear.  I was then referred to a Neuro.  This took 3 months to get an appointment.  She prescibed beta-blockers for my migraine headaches, I had severe wheezing as a reaction and was taken off of them.  I had a follow up appt which she said I had tinnitus and urinary problems were due to having hysterectomy 25 years ago!  Also my migraine symptons had changed after 40 years!  I returned to my doctor and told him of my increased tiredness back pain urinary urgency and lack of being able to go and a numbness down one side of this area.  He examined me and sent me to hospital for a scan at accident and Emergency.  There 2 doctors examined me; 1 said I should have MRI and the other said there was no surgical reason to have one.  I am still off work to the detriment of my students and colleagues. My employers are questionning the amount of time off I am having without a firm diagnosis of what is wrong, and I am here in limbo land.  Reading the other posting I can associate with a lot of the symptoms and forget to list them when attending dr appt, feel like I am wasting their time and just moan about everything all of the time.  This time 2 years ago I went swimming once a week walked my dog with my husband went camping did activities on the Wii and other computer exercises and games.  Now I sleep twice a day find standing in the shower difficult, walking upstairs exhausting, planning my lessons and orgainsing my colleagues in the department difficult to keep track of.  ~All in all fed up and depressed seeing the career and life that I have built slipping away from me.

I do thank all of you who have shared your stories they have given me hope and a determination to address these issues with my dr at the next appt in4 days.  Thank you
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Hello All,

My MS journey started last march.
It started with spasms in my calves at night.
Then the spams started coming in the daytime and I was getting more tired than usual.

I started having tremors and one day it all hit the fan.
I was working and my principal noticed that I was really out of it.

I was having trouble finding words, thinking straight, walking, etc.

Went to the ER and the ER doctor thought something was up so she called in the neuro.  The neuro came in, did an exam and said I was fine.

He said that my problem was from a recent raise in my Concerta.
The ER doc thought that was ridiculous and admitted me for testing.
The only testing they did was an ultra sound n my legs to see ifs had blood clots.

Two days later I was sent home with a walker and no diagnosis or explanation.  They released me with a diagnosis of unsteady gait.

Time went on.  I stayed home from work for a week because of the walking problems and fatigue.  I was in a flair and didn't know it.

I continued to work and my mobility got worse.  Started using a cane.
I went to see an ms specialist and he told me that from my exam and from my MRI results that I most probably had ms.

I thought this is great.  He sent me for an MRI of the brain and a c-spine.
Six weeks later i went back to see him expecting DMDs and he said that looking at my MRI's that I didn't have ms.  He said that although I has more than 23 lesions on my brain they weren't exactly what they normally see in ms.  He sent me on my merry way.

During this time. Was getting worse and had little fairs of speech problems, fatigue, etc, etc.

Went to see another neuro in Bridgeport, ct.  He looked at me and said that I either had ms or depression.  He said that my exam was strange.  He insinuated that I was faking it.  Either way he said he was going to have his brother look at my MRI's and let me know what he thought.

Two weeks later we go back and he says his brother said its not ms.  So he said I should see a psychiatrist.  

I had been seeing the same psychiatrist for five years for ADHD and anxiety so when I went to him and told him what the neuro said, the psych said the neuro was crazy.

Either way life goes on, I go back to work after the summer and have another rflair in October.  It presented itself as a stroke and I went to the ER becauseithought I was having a stroke or seizure.  I am still hobbling around with my cane but at that point I had given up on getting a diagnosis.

The ER doc calls the neuro.  The neuro comes in, different guy from the last time thank god, and says I am admitting you to find out what is going on.

He has me scanned on a 3T machine, I have three spinal taps, on seizure protocol so I can't get out of bed.

He comes in one day and says you have ms, and I am starting you n solumedrol.  He also said in two weeks I am  to start you n copaxone.

Sconce then I have moved from the cane to forearm crutch.  Had to stop working and saw the pt who said I have to use both crutches because she is afraid I am going to fall.

This morning i tripped coming out of the YMCA where I do an ms water aerobics class.  Good thing I listened.

That's my story.  

Kerri
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1936411 tn?1333835449
Hi. I’m Jane, and I am one of the lucky few who did not have to fight for a diagnosis. Looking back, I understand that it took years for me to be diagnosed, but I was the last person to realize I had a neurological problem rather than the first.

In 2004 or 2005, I had an episode of numb/prickly face. It came on slowly, starting at the tip of my nose and spreading over the entire right half of my face. I didn’t have health insurance at the time, so I went to a clinic. The doctor there told me she had no idea what was going on, and suggested that I try taking Ibuprofen for two weeks. I did, and the numbness slowly went away.

In 2008 I had a horrible bout of vertigo that lasted a little over a week. This time, I had health insurance but no regular doctor, so I looked up a local ENT. The ENT asked me if I had been sick recently and I told her that I had recovered from a cold a couple of weeks prior. She said that the virus had probably creeped up into my ear. She suggested I take meclazine and allergy medication for a couple weeks, but said that I would probably just have to tough it out. I did some internet research at home and found that vertigo can be a symptom of migraine, so I told myself that the vertigo was part of the migraines I have suffered ever since I was a teenager.

In early 2011, I fell going down the stairs from my apartment. Although it was a really bad fall, I wasn’t hurt. “How lucky”, I thought. A few months later, I fell again. Everyone told me I needed to be more careful, but I blamed the stairs for my fall (both times it was raining and the tread was slippery). I asked my landlord to install grip tape, and he did.

A few more months passed, and my left arm started to feel strange. It was aching really badly, and my thumb was numb. I couldn’t pick up small objects or play guitar anymore. I went into my GP and he asked me if I had fallen recently. I told him about my falls, but said they had been so long ago and I had no pain afterwards, so I didn’t think they had anything to do with my arm. He felt my back and said my muscles were “hard as a rock”. Then he prescribed me a pack of methylprednisone (steroids) to bring down inflammation, which he thought was causing a nerve to be pinched. He also sent me to physical therapy.

The physical therapist told me I had horrible posture (which is true), and gave me shoulder strengthening and posture correction exercises. At first, my arm got worse and every afternoon I had almost unbearable fatigue (which I assumed was a side-effect of the extreme pain in my arm). I dutifully took my my oral steroids and attended PT, and in time the pain and numbness subsided.

When  my 8 sessions of PT were up, my arm was feeling much better, so I assumed it was just a matter of time before it went back to 100% normal. But the week following my last PT session, I woke up to a completely numb left hand. I also noticed that when I looked down to button my pants, a strange sensation buzzed down my arm. By this time, I really believed I had  a pinched nerve from the falls. I called my GP again and he referred me to an orthopedic surgeon. The orthopedic surgeon spent five minutes with me and decided to refer me to a neurologist. At home, I did some internet research and found out that numbness can be a sign of MS. I told my boyfriend, “How weird would it be if I had MS?!?!” We both laughed.

When I saw the neurologist, he asked me some questions about my symptoms and scheduled me for an MRI of my c-spine. When he called me to go over the results, I thought I was going to have to decide whether I should have surgery on my vertebrae to fix whatever was pinching my nerve. I was completely surprised when he told me that my vertebrae were lined up perfectly, but there was a lesion on my spinal cord that looked suspicious for MS.

Over the course of the next six weeks, the neuro sent me for more MRIs (brain and spinal cord with and w/o contrast), a visual evoked potential test (which came out normal), and a lumbar puncture. During those six weeks, feeling returned to my hand, but my feet and genitals went numb. At that point, I started putting it all together. I looked back through my twitter account and found an old tweet blaming a “two-day hangover” for my lack of gross motor skills. I had completely forgotten that I had been having trouble walking right before the arm numbness began.

The LP results clinched my diagnosis, which came on 12/27/11. I start Copaxone next week. I feel like I was diagnosed early and quickly, even though my symptoms started years before my diagnosis.
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I am 33to years old with four kids.. My pain began when I was young and many doctor visits later I still come up at a dead end. I was diagnosed with optic noritis and was told it's an underlined problem. I did some research myself and really believe I have Ms I stay in pain my left side is numb most of the time I get electric shocks in my neck siatica no bladder control Im tired all the time and my hands dont always work I suffer vertigo badly and have recently started to loose my balance and have knee problems I also have HS ( very bad cyst) that I have learned go hand and hand with autoimmune disease. My problem is getting diagnosed I do not have insurance and I'm falling apart fast. I come home from work with purple swollen legs and cramp so bad I also get twitching in my eye that will last a long time and for so long I have written it off to just normal aches and pains everyone has because of the Drs not finding anything. I am at my end and don't know what to do every clinic Ive gone to refers me out but with no insurance whos gonna help me get diagnosed. If anyone has any ideas I am open I feel like Im running out if time and wasting my kids life growing up.
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while waiting for a dx you feel as if your life is slowly being taken away. the person that was once 'you' is no longer and all that is left is a painful memory of that person you so badly want to be again. i literally seem to have every ms symptom tthere seems to be, even had a 'stroke' like episode consistant with those in ms. severe bladder issues my ureologist diagnosed as 'neurological.' the 'fatigue' (hate calling it that because at  this point pray for the normal fatigue) is so much more than just being tired-it's really quite indescribable. i hate sitting still always have. if i found myself with nothing to do i would create things to do. love cleaning my house and take pride in the way it looks. playing basketball with my kids, gardening, and love to do my hair and put make-up on. going for drives just to 'see' the world and be social-thats who i ised to be-have tried with everyting i have to find that girl again but she is gone, lost in a world of uncertainty.
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but, as the story goes, i only have one T2 hyperintense focus in the right frontal subcortical white matter which was not there 7 mos. ago. my neurologist  said ms is possible but brain mri is not bad enough for a spinal. i have had several 'attacks' and am breaking down inside. i can literally feel myself falling apart and want my neoro to WAKE UP so i can do something with my life. i have had so many other drs (er and friends that work in medical field) tell me its obvious i have ms even a good friend that has ms has said 'i didn't even have as many symptoms as you do' i just want to 'find me again'
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572651 tn?1333939396
Welcome.  You may not realize that this was a very old post and many folks here won't take the time to read your intro.  I hope you will start a new post and reintroduce yourself with the details.  Welcome again, Lulu
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620048 tn?1358021835
That was confusing, I usually don't read dates and they were very long posts.
I don't have much to say now, it was too tiring..lol..

meg
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Thanks so much for your post.  I'm currently in the beginning stages of finding out what is wrong with me.  It began with undiagnosed Fibromyalgia.  We are now onto Sarcoidosis and a few more possibilities.  However, my cousin and an uncle had MS, so that's not out of the question.  I'm sorry you had to go through such runaround and so difficult a time at that.  I'll pray for your progression to be a very s-l-o-w happening.

Take good care,


Heidi
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I had urinary incogness and had a vaginal mess implant about 3 years ago when I was 36.  I am 39 currently, and MS runs in my family on my mothers side. I had the test MRI and it was negative. I have had the waking and not being able to move my entire left side, gaining use after a day or two with weakness dragging my leg and fatigue.  I would have pain while trying to sleep for years in my legs and feet.  I have also had pain in my hands knees, legs, back and feet.  I was diagnosed with osteoarthritis. I have also suffered with memory loss, feeling nauseated, numbness of hands, legs and feet, and lastly dizziness. Recently my mid back has been hurting on the right side and pain in my stomach.  I have been getting numbness in both hands and arms while sleeping pain or feeling of cramp on back of right leg and buttock, waking with numbness of left leg and foot.  I have been to a neurologist and they have not diagnosed my with anything.  I have seen many doctor over the past 5 years and no one knows what is wrong with me.
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Glad I found this site.  I supposedly had a left thalamic stroke nov 2003. It left me with short term memory issues, numbness right side of face and body.  Oddly, I woke up one day and my right arm was numb...I shook it off and joked at work that my arm was asleep all day. I went home feeling tired and nauseas.  Woke up next day and entire right side was numb, including my face.  I went to work, called doctor and was told to go to emergency.  I stayed a week...was told I had the stroke and there appeared to be signs of previous strokes.   Since that time I had all the symptoms of ms, with a concussion thrown in two years ago.  Since then it seems as though everything got worse, numbness, body and back pain, spasms.  Hand trembles, losing balance, stumbling, difficult to focus, memory messing up, no ability to multitask.  Saw neurologist, had MRI...she said I had white spots, but thought insignificant.  She sent me to get more blood work and an EEG yesterday.  Waiting on results.   However she started hinting about depression since I've been treated for it.  Why would depression bring on numbness, trembling, stumbling, etc?   I get feeling that I'm about to go on the frustrating journey many of you have walked.  Any ideas?
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Forgot to add that I'm struggling with bladder control.  
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I hope your neuro is not going down the road of attributing your symptoms to conversion disorder--where the mind "converts" some psychological problem into physical symptoms.  It's pretty controversial except to many doctors who would rather refer people to a psychiatrist than get to the bottom of their patient's symptoms.  

In any case, conversion disorder is supposed to be a diagnosis of exclusion--all reasonable attempts to rule out an organic cause are supposed to be done first.  And true conversion disorder is probably much rarer than MS or its mimics.  Am a bit suspicious as you had white spots that she seems to have been dismissive of.
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1831849 tn?1383231992
Hi DA - Welcome to the group.

This thread is a little old, it was tarted nearly 7 years ago and many of the participants may no longer visit. Why not "Post A Question" via the link at the top of the page. You can introduce yourself and tell us a  little about what's going on. We're a pretty friendly bunch :-)

Kyle
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My neurologist said I don't have MS and I had a false/poitive acetcholyn antibodiectest for Myasthenia Gravis. Ive waited six months but my symptoms are getting worse noticeably the stiff legs and blurry vision. I can't go out incase my legs stop working. I had three MRI scans one had a lesion but again the neurologist said i must have moved in the scanner !!! Yeah right !!! Im being treated like a hyperchondriac and its getting me down. So fed up
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Quix- I see this is an old post, 2007, but I actually signed up for this particular community on this particular site to tell you: I've seen your name in various forums, while "just passing through" (looking for ANY MS information I could get my hands on after my dx in 2011, as I was SO scared, shocked, + all the other lovely feelings we get @ initial diagnosis!). Anyway, it wasn't until stumbling on the post here that I've read your actual "MS story". It was obvious in the few things I'd read elsewhere that you have a medical background, I just didn't know how/where-- and am not one to go all "stalker" trying to find out ; ) . I don't know that you'll even see this response, as you may have long-since abandoned this forum (?), but I feel the need to tell you: I hope you understand the impact you've had on others with MS through your helpful & kind words within the great big 'ol world-wide-web. And I hope you always know that you've not "lost" whatever it was in your heart that pushed you through your medical education, through the years spent treating children & others-- but that you've simply 'switched gears', and have had a very big impact on an audience I'm not sure you even know you have! So, with that, I for one Thank You, ma'am! ; )
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1831849 tn?1383231992
Hi RR-

Quix, our resident MD, is here on an occasional basis. She pops in from time to time when she can. She has taken a step back from the group so that she could focus on her 3D life :-)It's possible that she will read your thoughts, I just dodin't want you to think you were being ignored :-)

In any event, welcome to the group! You and I were diagnosed in the same year :-)

Kyle
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147426 tn?1317269232
I did see this.  Thank you and all the others for the very kind words.  Quix
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we miss you but understand and hope you are doing well and enjoying what you can do!
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You and Quix have it and so do I. I was originally diagnosed in 1993 and couldn't seem to get any help to get on Medicare back then and still had to work full time in secretarial jobs after I had graduated late from college with a BA in Psychology and Art. I wanted to become a doctor but couldn't handle the exhaustion spot of working on a Masters Degree and then a Doctorate! Anyway, later on my husband who was my boyfriend when we were teenagers, an I got back together he asked me to marry him and I warned him that I had MS and I wanted a horse again and he said it was okay and we got married in 1998.  Then he suggested that I get another MRI, in 2000, because I sure still needed to know (myself)and make sure that I had MS and wasn't just lazy or crazy! Yep, I sure had (and still have) that crud on my brain and it was worse than it was in 1993! I did Copaxone back in 2000  until I had a negative reaction to a shot in my abdomen and passed out and he lost his job in 2002 which  was after 911 happened. Financially we were up and down for some time and then I got back on Copaxone in 2010 when he was working for his big company he use to work for before and I had 15 months free medication and quit when I felt that I had a bad reaction to it! But, yesterday I saw my Neurologist I've seen off and on for the last 14 years and the reaction I've been thinking I'm having is just the paranoia that diabetics and others have towards needles!! Because I've had some crazy relapses of all kinds and now, since 2010, progressive relapsing ( hopefully always) remitting MS I'm working on getting back on Copaxone where I only have to take 3 shots a week. My doctor said I need to take 6000 IU Vitamin D3  not just the 400 IU vitamin D I thought was enough! I guess Vitamin D needs to be D3 in order for our bodies to Absorb it! I understand it's good for energy! So is the sun in a modest Vitamin D way according to him! You know, the sun sends Vitamin D down to us! I feel like an anomalies! Good luck to you both!
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Hello my name is James and I am a 28 yo male.

I ve recently spent 5 days in the hospital,  in Edmonton and have had an MRI, and spinal tap.  All to which have come back negative.  But I still continue to have numbness,  weakness in arms, and especially in my left leg.  I get dizzy, light headed, and have blacked out once for about 10 seconds.  I get these horrible pains that feel like I stuck my finger in a light socket or wall outlet.  They at times bring me to my knees and last for 30-45 seconds.

I need some guidance as I m starting to become a bit depressed not knowing what is wrong.

I also have  experienced  some incontinence
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Hello..I hope you are feeling well and your 3D life :) is good. I am posting today because I had another 'episode' yesterday and I think maybe I'm losing my mind :) It all started for me back in 2001 and I just turned 52 this month. I started out with extreme dizziness for lack of a better term...I felt like I was falling off of a cliff. Back in 2001, they did ear test..all normal. They did MRI, normal. As time went on the episodes would stop for long periods then they would come back with a vengeance. In 2011 I was putting groceries away when I felt like I was being 'pulled' sideways across the room. I was 'dizzy' and stumbling uncontrollably around the room until I stopped dead in front of the sink where my vision went grey, like looking through a grey colored sheer curtain. I heard the words in my head, "I going down" and I did just that. I don't know how long I was out but when I woke up one of my dogs was laying by my head and the other was racing around me whining and barking. I went to the hospital and the MRI wasn't clear. They did a second one and said, "normal". I had tingling like a 'cap' on the back/top of my head, in the tip of my nose, inside my mouth and up the left side of my face that went on for days after the 'episode'.

It was a long time but it happened again one time walking out of my moms apartment. Then a hallucination at the grocery store that scared the daylights out of me. Another time I was washing my old truck. I can't tolerate heat at all so maybe that had something to do with it..I don't know. It's severe dizziness/vertigo..not sure what to call it. The last time it happened before yesterdays 'episode' was about six months ago. I was messing with my albums when the dizziness started and I kept saying (or thinking) "no" repeatedly. The next thing I know, I was stumbling across the house  like a drunk. It was the same feeling you had when we were kids and we'd lock arms and swing each other around only, I couldn't stop it and no one was here. I fell over two stereo speakers I had sitting in the middle of the floor because I was in the process of rearranging things. I landed hard, cut my leg, just laid there and burst into tears.

Yesterday I was sitting at my desk going over bills. My eyes would feel like they were zooming around and I had to force them back into focus. Then the dizziness/vertigo feeling came over me and I knew there was no stopping it. The strange thing is, I always feel like I have to stand up if I'm not already and I can't stop that either. I stumbled about 6 feet into the loveseat, bounced off of it and around the front into the center of the room where I stopped. It felt as if I was still being pulled to the left but also like my left side wasn't connected to me somehow. I can't explain it right...

I have had the feeling of a sock on when there was none. I have felt that feeling of liquid running down my leg and looked to see nothing there..thankfully :) I have been standing up while holding a coffee cup and not realize I dropped it until I saw it just before it hit the floor..on my moms brand new carpet...I felt horrible!

I have, over the last year, lost muscle in my left thigh. There is a huge 'dent' and it's now about half the size of my right. I have been diagnosed with SCLE, Fibromyalgia, Raynauds, and Ocular Migraines.

I have not told my doctor about the 'episode' yesterday due to it being a holiday weekend. I think he's starting to think I'm crazy like other doctors in my past. It makes me feel very sad because I am pretty sure (lol) I'm not nuts...but even I am starting to wonder at this point. They have ruled out seizures and lesions or bleeds on and/or in my brain. I did tell my doctor (PA) about the muscle atrophy in my left thigh but he has never looked at it..it's really got me concerned because it's not getting better and my left leg is now a lot smaller than my right.

I don't have much..any lol..money and I live on SSDI so, I have medicare and medicaid. I don't know if all of this is just in my head or not but, every time I start doing a search to try and figure it all out, MS comes up. I know MS can mimic a multitude of other things so I'm not saying I have MS. I'm just wondering if what I have described sounds vaguely familiar to you or anyone. Could I just be dehydrated? I have been told that too... Seeing a Nero, let alone a good one is probably wishful thinking. I just feel lost and don't know who or where to turn anymore and I don't know what's wrong with me.... I just know the 'episodes' are very scary and 98% of the time I am alone so no one is there to see it or to just tell me it's all gonna be okay...
I better stop now.. I hope with all of my heart that you and everyone else on here who has shared their story are doing well. My heart goes out to each and every one of you. Take care..

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I'm 44 and about 5 years ago my left shoulder locked up and my arm started to loose strength , around the same time I had an extreme ear ache the arm sort of got better but returned around the same time the next year and the next meanwhile my ear infection got so bad last year I finally was diagnosed with a cholesteatoma and had surgery to remove it, I was also tested for lupus as my arm lost strength again my shoulder has locked up my heart seems to play up and I feel so tired I have realised this seems to happen every year at the same time in the warmer months my GP has orderd more ANA ,ANCA  and a whole range of other test , I'm tired of the same thing every year and I get worse with every relapse that what I call it cause it's the same symptoms over and over every year. All I want is an answer wheat her it is good or bad cause I'm tired of no one believing me with how I feel
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11586742 tn?1419628494
I am so glad to have come across your post.  
My father is 67 years old.  He and my mother are missionaries in Mexico, and have been there for the past 3 years.  They came and visited with us over this past summer.  What I saw in my father, I was not prepared for.  He would have "episodes" of shaking hands and knees, slight double vision, slurred speech, awkward gait, drop foot, numbness and tingling in his hands and feet, and total loss of balance.  Almost over night, he has become frail and has turned to using a cane.  My father said, this has been going on "for some time" and " it's probably Agent Orange"  He served 4 years in Vietnam 65-69, and has worked off and on during my teen-aged years, in nuclear plants.. My mother says " he's just dehydrated" ( God I love her ).  I did some research and came up with either Parkinson's or MS.  Dad seemed to think that after hearing the symptoms of MS, he had a diagnosis.They left to head back to Colorado after making them promise me they would see a doctor before heading back to Mexico.  He went to the VA hospital, where they ruled out Agent Orange. They ran an MRI an CT Scans, both came back neg for MS and Parkinson's.  Blood work was run for everything under the sun, and the only thing they found, was that he had Wilson's disease. No spinal tap was done to my knowledge  Still, in no way does this explain his symptoms.  They gave him a 'script for the Wilson's, but left everything open ended.  He just recently came back tot he states, stopped the medication so the VA doc's and neurologist could see the full set of symptoms. ( meds they gave him for Wilson's didn't help, and messed up his thought process ).  They still have no answers, and the doctors told him, that it was basically all in his head.  He caught wind of a " new age" doctor.  This man packed his body with ice packs which seems to be helping somewhat.  But again, still no real answers.  
  I was wondering of you may have a little insight to this, or if you could pass this information on to someone who might have a clue in which way to point me.
If you have the time, would you please send any helpful info
Thank you so much for any light you can shed,
SJ
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Four years ago I woke up to a spinning sensation, fatigue, nausea
Then as time went on pins and needles in right shoulder blade followed by tingling. Pain pulling sensation in neck, stabbing pain in ears, tremor in hands, water infections, joint pain especially in knees and pain radiating up back.
Fatigue and vertigo are by far the worst symptom. The vertigo is there 95 % of the time and has completely taken over my life.

Ear problems have been ruled out by ENT.
2 brain scans without contrast by 2 different neurologists both normal. My gp is now saying it's something I am going to have to live with as a lot of tests have not showed anything up.
Where do I go from here? X

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987762 tn?1331031553
Hi and welcome,

You've actually posted on the end of a really old post (2007), many of the original posters are no longer active in the community.....

I know nothing about the health system in Cyprus but I would recommend you seriously consider getting a new GP........it's totally unreasonable for someone your age, to not be given symptoms relief and simply told your going to have to live with it! MS isn't the only condition that these symptoms are connected with, but i do think you probably need to see some one that specialises in vestibular dysfunctions for help...

cheers.........JJ
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5112396 tn?1378021583
Are you by any chance an ex-pat or affiliated with the British military? I ask because it may be that you have more expertise to avail of if you arrange an appointment back in the UK through the NHS. (Just taking a punt based on your perfect English and the fact that all the people I know who've lived in Cyprus were British). Just throwing that out there.

I also know little about Cypriot health care Which partition are you in? Does that effect what's available to you?
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Quix,
  Thank you so much for sharing your elaborate story. It was very interesting and helpful. I am at my 26th month of NO DIAGNOSIS! IM confident you identify with my long term frustration.  I usually start each day positively, although some days are daunting just to get up and not feel trapped!
It started out 2 months after a right shoulder partial replacement (Arm not socket) when suddenly one evening left foot drop and paralysis in sensation just developed BOOM! The embarrassing limp in public, symptoms which reflected sciatica at first....but doesn't fit all the criteria. As it quickly developed into varying degrees of paralysis throughout left lower back, hips, and down to my toes. Left foot drop, and the pain greatly concerned me.  Ive had 5 EMG's, multiple lab work, NO diabetes, NO cholesterol probs, NO results pointing to a DIAGNOSIS!!  SO now, 26 months later Ive been seeing a new neurologist at the University of Washington Medicine department for fresh eyes, perspective, and ideas on what to do and where to go from here??  Once again, thank you Quix.
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1831849 tn?1383231992
Hi 12

Welcome to the group. This is a pretty old thread, but Quix is a great source of timeless information. SHe doesn't visit much anymore and I didn't want you to think she was ignoring you :-)

Do you have any MRI in LP reulsts in your mix?

Kyle

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I feel like your story is mine several years ago I started having pain in my feet and arms weird shocking going up and down my legs finally went to a Neruo and he said early stages of Fibromagy so I went in my life thinking so for 7 years when fatigue set in I would drag my self to work and was always dizzy pain got worse went to my Dr she sent me to another Nero were I had a EMG done and showed abnormal my sensory and motor nerves were being stripped as he also said some could be do to diebetes I'm a type 2 for 12 years although I have not had a bad a1c in 11 years I was only taking 1 metformin a day now not on any meds My Dr disagreed so he said something else was going on like 2 things well he left the country and so off to another Nero test and test he put me on Lyrica has done nothing but make me fat and tired I have resently started falling and my shoulders and legs are getting so week I tremor I keep asking what is wrong with me he says I'm working on it I have been off work for 2 years sit in my chair got braces for my legs which hurt me so bad I can't even dress my self some days I'm about to go to Mayo I want a mri of my brain so frustrated
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16953325 tn?1452616071
Hi my name is Soli and im 19 years old, around 2013 i was having a lot of health problems diagnosed with sinus tachycardia having seizures blacking out. And then one day i woke up and the left side of my face was numb and i ignored it thought it would go away and it didnt for about a week so i went to the local ER and the said it almost sounds like a stroke but your only 16 so it cant be.. so i got  an mri done and it showed little spots on my brain. They said im sorry but it looks like you have ms.. i was terrified we went to a neurologist and they did many tests and said it was just migraines. So now at the begining of December 2015 i noticed that my right hand fingers were a little numb i ignored it thinking it was a pinched nerve and over 4 days it spread to my whole hand. Then i woke up the next day and my whole right side of my body was numb. I immediately got out of bed and went to the ER they did an MRI and it showed that since 2013 i have 6 new brain lesions and theyve grown. They said im sorry but it looks like you have MS. So i went and made an appointment with my old neurologist and he ran a bunch of test and i recently got a spinal tap done they said there were no obvious signs of MS but we forgot to draw blood when we did the spinal tap so they just got the blood results back yesterday and they told me i do have MS. And my numbness has left my right leg and progressed in my right hand and is mak8ing my coordination bad in my right hand to where its hard to use it.
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667078 tn?1316004535
I am so sorry you were diagnosed with MS. This is really hard. The good news is you can go on one of the medications to slow the progression. Each case of MS is different. No one can tell you what will happen. Many people with MS these days do not progress to a wheelchair because of the medications. I have had MS since I was 2 years old. I am 52 now. I still walk and swim and ride horses. I walk more slowly than I used to. Most of my attacks happened when I was a small child. Now I just have some slow progression.

When do you see the neurologist. Is the neurologist a MS Specialist if not you might want a MS Specialist. Your symptoms might come and go. There is inflammation in MS. When you have inflammation you have symptoms. When the inflammation goes away so do the symptoms.

You might want to contact the National MS Society. They have a lot of information which is free about MS and living with MS.

Alex
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Hi Quix,

I hope you are still out there waiting for responses and doing well.  I am 54 and also got the same "you are too old" speech.  I have many white spots on my brain MRI but none active with contrast and was told that could be from a history of smoking.  I had 2 bands on the spinal tap for MS but I'm told they need 5 for a diagnosis, but you said they like to see 2, which I have.  My symptoms started noticeably about a year and a half ago although looking back it could have been longer with some chalking up some to old age, urinary incontinence, fatigue, insomnia, depression, memory loss, etc.  The noticeable symptom I now have is an uncontrollable tremor in my left leg.  It starts around the ankle which gets tensed up and starts the tremor.  My test with the electrodes was off the chart.  My MRI of the spine was normal but I did not have the cervical area done, only the thoracic.   I'm now being sent to a MS specialists hours from home.  You mentioned ear problems as well.  I have tinnitus now that never goes away.  It drives me insane.  When I first noticed it I went all around my house and made sure everything was turned off and it has never gone away.  I'm not even sure when it started, if I just never noticed because I was used to it or what.  

Anyway, some of the things you mentioned hit home with me and I hope you are doing well.

Shari
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WOW, I have been through all of this for the past 15 years. HUGS. I am an RN Case Manager out of work since 6/9 because I just can't do it any more. The fatigue, the spasms, the vertigo, the nausea, the brain fog.

I am also the parent of two total care disabled children. I assisted my son to transfer from a wc, felt a horrible pop in my back, found 2 old pars fractures, L5, subluxations, herniation and Spondylosis and Spondylolethesis and told that is not causing this, just makes me more uncomfortable. I have had what they tell me is a Syrinx T7-10 found in 2001 when only by left big toe was numb, which may or may not be a gigantic MS lesion. And now have a lesion Corona Radiata that wasn't there in 2006.

But still am told, none of this is causing my symptoms. And I have CLASSIC Coronia Radiata lesion sx, right sided lesions, left sided weakness, numbness etc.Now starting to have some on the right and wonder what small left sided frontal lesion has not yet been found. I was dx with "Probable MS" in 2006 but declined treatment with Avonex because they did not have a definitive diagnosis and I was told it was a "shot in the dark" to see if I would get better. As a third year nursing student and mother of a newly diagnosed toddler with a Fragile X Syndrome (I also have to worry about Fragile X Tremor Ataxia Syndrome..and am told too young, too female for that) but I know it happens since its such a rare disorder we all know each other and whose parents have been effected and some are women under 60....just not statistically relevant enough to be believed women.
I feel for all you have been through. The frusrtation, the worry, the total lack of ability to plan for your future, but mostly for not being believed as both a patient and medical professional yourself. ((Unlimited hugs))
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My dad had MS - transverse myelitis, to be exact. I'm guilty of not knowing much about it beyond it was chronic, and he had relapsed multiple times in my childhood. Fairly aggressive the last time - intense pain in his hip, no feeling in one leg but able to move it, while the other he could feel but could not move, and oftentimes it was quite swollen. Incontinence. Brain fog. Fatigue. Limited to a wheelchair. Pins and needles all over. I can remember him being a part of clinical trials and whatnot to discover more about ME as he had a "rare, 1 in a million two times over" form. He had been diagnosed when I was 2  - so that'd be 1995 - and passed away in 2009 when I was 15, and in that time I had very little memory of him walking or being well - by the time he died all of his organs were beginning to fail, and was coping with alcohol - and I'm fairly certain the experience gave me an irrational fear of having it myself some day. And because of that I've never really researched it, kind of like "out of sight out of mind"
(Is it irrational though?? MS is something I wouldn't wish upon anyone! And I always remember hearing my dad say it isnt hereditary, but that it's also a disorder that scientists aren't 100% on cause and etc.)

So enter today. I'm 24, trying to find an illusive hyperactive thyroid problem, diagnosed with fibromyalgia (although I don't believe that's really it.) as well as Schueurmann's, potentially scoliosis.
Schueurmann's is lordosis in a c shape that occurs during puberty, where the vertebrae fuse into little wedges on the sides, causing limited mobility and humpback. Thankfully mine's not 'surgery necessary' but it is painful and noticeable, and at 17-18 I had fractured the area. But what scares me is nobody seems to take certain symptoms seriously when I tell them, because I'm 24 and visibly I look healthy. I had to fight and see 3 doctors just to get this far. That irrational thought bubble of 'it's MS' constantly pops up and I fight it because it's uncommon, and I know it's irrational, because many MS symptoms are present for other conditions. And the odds would just be crazy.
But they overlap. I get brainfog, I've complained of numbness and tingling/stinging ever since this 'thyroid' problem presented 6 yrs ago, after I had my first child. My legs get weak. I can feel the 'hug' my dad described (and grandma looooves to remind me that my spine curves like his). I swell. My joints and bones ache, deep like it's the marrow. I get occasional small spasms that are generally painless. Some days i feel wonderful - borderline jittery but without pain - where as others i literally call them my "Grandma days" because I walk around like an old lady and i'm incredibly tired. And just recently it's like my tastebuds are off. My vision has gone down but I worked 3rd shift on a computer so I'm not surprised. I've been showing signs of Afib.
I've had a slew of tests - bloodwork is nearly normal. t4 is low, slightly high WBC, but otherwise normal. Normal bone density. No signs of an autoimmune. I just did an uptake and my thyroid looks totally normal. So I'm on my way to an endocrine in December but I've got two kids and I just need that little 'MS' voice to SHUT UP, because stress makes everything seem worse, and I feel a bit like i have a tinfoil hat about allof it ;p But after reading this post and others in here I just felt like I'd get a good answer without judgement that I'd feel solid about.

So, if anyone could alleviate my fears, or point me in a direction, i'd be beyond grateful. :3
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