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My Journey to Diagnosis

Mar 28, 2008 - 40 comments

I am a 56 year old 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 suffered.  I had trained in a huge county hospital and regularly spent 36 hours straight on my feet. The fatigue with vertigo is worse!!

Three 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 my sock on. 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.

I knew this neurologist thought I was a crock.  But, he was also supposedly brilliant and had been named one of Portland's "Top 100 Doctors.  So, even though he didn't seem to like me, I expected him to be knowledgeable and professional.  He 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. At the 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."  fI asked what could have caused the sudden weakness and spasticity and he said maybe I had a stroke.  But, he didn't think working me up for things that cause strokes was necessary.  He sent me home with the diagnosis of "Vertigo and Spasticity- mild."  I didn't know much about Adult Neurology and was too fatigued to check out what he had told me.  Why would he lie about it?   Later I discovered in his notes that he thought I was faking the weakness in my right leg (faking spasticity??)

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, I 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 collapsed in the street crying and a neighbor helped me home.  The fatigue and weakness in my right leg continued and became progressively worse.  A few months later I had a couple weeks of a weird sensation of warm water running down my right thigh. I kept grabbing myself and checking, because I was sure that I was being incontinent.

I went back to the neuro a year after he had seen me before. Because of the history of incontinence he repeated the MRI and did the complete battery of blood tests for the causes of myelopathy (disease of the 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... So I told him that "he" was the neurologist and what did he recommend?  He said he didn't think the LP would reveal anything.  So I told him I didn't see any reason to do it.

The next 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 still dragging my right leg, because it never got better and lurching about like a drunk sailor.  I was 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. I never wanted to see another doctor in my life.  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)  The problem was that my MRI was "normal" (or so I had been told) and I was too old at 54. You can suspect MS, but it appeared that 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.  My first neuro was on their list.  I called them and found that doctors "volunteer" that they are specialists.  There is no selection process.   I found another Neuologist, 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 said that there is no upper age limit for diagnosing MS.  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. They were just a little "ratty" looking, not really hyperintensities, but tiny areas that looked different.

The tap was positive for an elevated Protein, 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'd had intensive physical therapy and still required a brace on my R leg and I needed to use a cane.  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.

A month after he diagnosed me, I developed constant electric shocks down my left leg when I flexed my neck.  Dozens of times a day.  It's called L'Hermitte's Sign, and it is common in MS, but was new to me.  It is felt to indicate upper spine lesion that presses on normal nerves when the neck is flexed.  He ordered another MRI of my spine but specified that it be done on the new 3T machine in a private imaging center nearby.  That MRI showed 6 lesions that had been invisible on the earlier 1.5T machine.  Four of those lesions coincided with the areas he had been suspicious off in the earlier MRI.  This clinched my diagnosis.

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.

An arrogant and dismissive neurologist had misread my MRI, erroneously told me I was too old to have MS, indicated that he thought I was malingering or faking my problems and failed to do the proper work up for someone with weakness and spasticity.  His treatment of me was humiliating and further destroyed my almost non-existent self-esteem.  I set out to help people who have been put into this position.  If I can convince even one person to take control of their own destiny and move beyond those soul-sucking doctors who blame unexplained neuro symptoms back onto the patient.  I knew I wasn't crazy, but I almost let an arrogant bast**d convince me otherwise.

That is why I am here and do the things I do.

Quix


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405614 tn?1329147714
by Fluffysmom, Mar 28, 2008
Wow.

In a sense, I am grateful to that neurologist, because he was such a monumental pr**k that he pushed you towards helping us, since people like him wouldn't.  I did a double take when you said he was in Portland, because I couldn't help but wonder if he was the same arrogant S.O.B that humiliated me.  From what I read here, he isn't an isolated case.  And I thought only orthopedic surgeons thought they were gods!

I am so sorry that you have been through so much, and that your progression is so quick and disabling.  I am in awe of people like you who rise above and help others.  I hope to be of help in any way that I can.  I already feel like I've been helped so much by visiting this forum.

I'm so glad you do the things you do.  Keep up the good work.

Kathy   (Fluffysmom)

444414 tn?1376579695
by kimbykat, Apr 11, 2008
I can certainly relate to your story. My 1st neuro told me that I was fine and told me to go on the ketone diet. The 2nd said I clearly had JME seizures and put me on 5,000mg of Depakote a day. The next told me I have "non-specific myoclonic jerks" and suggested 500mg of Depakote and said that I have Fibromyalgia and sent me home. The 4th has decided that I needed an LP which I just got Monday. He indicated, as all the others have that my MRI was normal. Now, not being a dr I frequently don't know what's going on but the thing I noticed immediately is that there is a big white patch visible on my MRI at the front of my brain that is visible through out the images that was not there 8 months ago. Not to mention the 5 spinal lesions on my thoracic spine that no one is addressing.

I have felt insane the last two years and totally in the gutter. While it's been suggested sort of quietly that I'm suffering from "somatoform conversion", no one has really made a big deal about it yet. But every time and w/ every dr I get the same look like "well you're fine, go home and get a life".

I feel for you that you had to go through that with that neurologist. It's painful to think about that anyone should suffer that kind of mistreatment. What's more horrifying is that I have encountered so many people recently who have gone through similar experiences w/ drs. One woman suffering for almost 20 years with drs telling her she's making things up as symptoms progressed and got worse b/f finally being diagnosed w/ Lupus.

My heart goes out to you for what you went through and certainly, I'm happy to hear that you're using your powers for good to assist others on here in the same sort of boat you were stuck in. It seems that only those who have had these types of experiences can understand how devastating emotionally it is to get that look or that biting statement that you're just a big, crazy faker. It hurts and family and friends can't always understand the disapointment.

In any case, bless you indeed for sharing your story and certainly for assisting others in their quests. Take care!

hugs - kimby

476834 tn?1228402309
by RAY911, May 02, 2008
Hi,

I read your story.  what hell you went threw!!!  I can relate very much so.  It is so sad to me that Doctors will dismiss symptoms thinking the pt is making up symptoms.. ugggg,,, Its a shame and I'm so glad you were finally able to get the help you needed.  

I'm praying for the same.  who know in time maybe,, then again maybe not.  

Ray

495035 tn?1221756692
by ohwild, May 02, 2008
I'm so sorry to hear about the ordeal you had to go through, But it does give me hope, I have been feeling lately that my doctor thinks that i am faking, but no one can fake spasticity its there or not, I have been in constent pain or numbness, fatigued. layely having vertigo to add to the ever increasing list. the doc writes it down and throws more pills at me, makes me not want to go there anymore. Today i go to see my lovely podiatrist who diagnosed me with spastic foot drop, she was the one who told my doctor to get an urgent brain scan done, unfortunatley im still waiting and i guess until i cant get up out of the chair nothing will be done, so i really do understand what you had to go through to get a diagnoses

465975 tn?1224235235
by michael1028, May 04, 2008
Quix,
  I can so related to arrogant Doc's I have a second appointment with the so called "expert" Tuesday May 6, I will let everyone here know the out come. As I said before I will give you a timeline  of my journey in the next few days that led me to this fourm. I am very thankful for finding this place.

God Bless,
Mike

505751 tn?1225036062
by Satori1952, May 14, 2008
Quix,
I so much identify with everything you said and went through. I got lucky yesterday and after 18 years found a neurologist who I know will help me. He is not treating me like a hysterical woman making up all that has happened to me over the years. Finding this forum has been like an answer to a prayer. Maybe if I had something like this 15 years ago I would have found the courage and strength to continue to look for a neurologist who cared about his/her patients (after my experience with 2 of them I just stopped and tried to deal with my symptoms the best that I could). Anyway, it was my good fortune to find a family doctor who would not let me give up and helped me find my current neurologist who is now doing everything that should have been done years ago. Thanks so much for sharing your story; from your words I find inspiration.

511283 tn?1211998094
by av8rgirl, May 18, 2008
Thanks for sharing your story.  I was dx'd at 48 and the neurosurgeon that dx'd me also used the term UBO's but in a descriptive way, not condescending.  He was very sympathetic and caring.  I had two relapses in 2 months, 7 lesions, 6 in my brain and 1 in my t-spine.   I have had so many relapses since my dx I have lost track.  None of the DMDs have worked so I volunteered to be a lab rat for a clinical trial in Portland, OR at St. Vincent's.  

I think each one of us has our own story about the dx process, fortunately mine is a short one.  I have a great neurologist here in Boise and the one who takes care of me through the clinical trial is also wonderful.   I guess I have lucked out!

Thanks for the information you've provided.  I am sure that I will find more.  

Cheryl

515698 tn?1211493123
by sissy59, May 27, 2008

Hi Quix
I am new to this site. I was a Pediatric nurse, until I got sick in 87,I had two back surgeries and two cancer surgeries then while I was in the hosp after my second cancer surgery I was terminated. I was told I was terminal so it did not much matter.

I started having sx several yrs ago I think but did not pay a lot of attention to them because I was always  told they were back related. So when I started having actual  "incidents" (do not want to call them flares)that caused several things at once to go wrong and  it would last for a few days up to 3 mo  I went to a neuro that my PCP sent me to because I insisted on finding out what was wrong with me. The neuro never did an exam at all He had me fill out 22 pages of an H & P .As soon as I sat down  he said I was a little to old to develop MS and I do not look like I have MS. I handed him this report that was done the year before but I never seen until I picked up a copy of the MRI to take him, My PCP had said was normal....Then when I picked it up to take to him I saw the report for the first time. On my report from my MRI in 9-23 2005 it has this ;

A nonspecific approximately 7 mm signal lesion in the right calvarium is noted in the region of the diploic space. This may simply be due to an arachnoids granulation. This can be followed at clinical discretion. A neoplastic lesion such as a metastasis would be considered less likely taking into account the patient's history of seizures.
What does this mean ? Could this be a MS lesion ? It was not followed up on.
They have my Clinical History as Seizures ?  I have never had a seizure !

The neurologist said he would be concerned IF I had a history of CANCER.

I HAVE HAD CANCER 2 X !!! Metastic Malignant Melanoma

          It was on the report I gave him that he was pretending to be reading. I was so mad that I did not say a word I just kept my mouth shut and walked out.

A year later I was sent back to see him. My DH went with me. He did not even come out from behind his desk . He repeated that I was to old to be DX with MS and all that was wrong with me was RLS. He put me on Mirapex. When my DH insisted that there was something wrong with me ,the doc said
" Maybe you need to go to one of them Fancy Places Like the Mayo Clinic or something." My husband whom is very educated and smart stood up and was fixing to hit him . He was furious !! He was talking down to us.!!

So I refused to go back to see another Dr. I was so embarrassed. I had two more "incidents" The first was small and passed after 2 weeks. The second one I decided to do some investigating myself. So I visited the MS sites and investigated my SX. I did a lot of reading. You see my DH has MS he was DX 'd in 1988 . Never went back to the Dr. He does not tell anyone.

I went to a neuro that was very popular at the Hosp where I worked. I thought very highly of her but knew it would take me a long time to get in.

My pain clinic sent me to see her but I was already feeling so much better from my " incident". But I went ahead because I trusted her. I had my MRI with me that I had done in 2005 .Plus my diary of all my SX and problems. I did not reorganize her she had gained quite a bit of weight ( 75 to 100 ) and 20 yrs older. But that did not bother me at all . After all I have had a weight problem all my life and I was about her age.

As soon as she walked in the room and looked at me she said you do not have MS you are to old to be DX'd with MS and you are two fat. She asked me why I thought I had MS. ( by this time I was in tears).

I told her  that when I told my PCP about my sx's ,like feeling like the whole right side of my body was wet when it was not. He said that it sounds like you something in your "brain is misfiring" I asked if it could be MS and he smiled and said" it could be". But he never ordered any tests or sent me to a neuro. That was in 2002 . Then the next year 2003 I voiced my concerns to a very Dear family friend who was quite up in age (mid 90's) but still very much with it, said that she was 90% sure it was MS but could not order tests because she strictly took care of the cowboy's out on Dolph Brisco's ranch. But made me promise to see a Neuro as soon as I got home.

Well she never examined me. But I had a wrist brace on for carpal tunnel and she asked me about that. She told me to get it fixed, have gastric by pass( she was bigger than me) and get some counseling. But she asked me back in 2 weeks!!!  I made an appointment.

In the mean time I had my hand fixed. Asked about the by pass  and was turned down as I was not a candidate . Plus got an appointment to see a therapist. I went back 2 days after I had my wrist done. She was even madder . She thought she was going to do my hand surgery .....I had no idea she had that in mind.
She dismissed me as her patient...

Oh this is way to long and it has taken me several days to write. I am sorry..I will try to condense it more.

In 2007 I had a really bad incident, cog fog, numbness, tingling,severe fatigue, unable to stay awake, depression, etc.. But after 4 weeks it went away and left very little residual. Back to another Neuro he said I do not have MS and the 2005 MRI was normal . He ordered another MRI It was normal . He did a nerve conduction test, I thought was going to be painful but I did not feel anything. He said I did not have RLS I had terrible muscle spasms in my legs 27/7 Put me on Neurontin over the next 6 mo he just increased it . Then said he could not find any thing wrong.

I had two more incidents in the next 6 mo. Ignored them, refused to go to the Dr.

Feb 2008 had a very bad one that scared my DH to death. I was so bad we thought I had a stroke MRI normal.My whole rt. side was numb,tingly and very painful.My rt eye went blurry when I got tired then it went to both eyes, then I had Dbl. vision and painful along with feeling swollen.. I could not remember a lot of things. Golf scoring (don't laugh I never miss my Tiger) was gone. I nearly burnt down the kitchen and did not remember, I could not remember numbers ,spelling etc...After a month My DH forced me back to the last Neuro. He looked at the MRI and did the nerve conduction test again  but this time it hurt like hell..I had blood running my legs. My eyes were perfect. 20 / 20 with my glasses. Finally he said he could not find anything wrong with me. He was very impatient. Increased my Neurontin to 400 MG 9 X a Day. If I take that I will be a walking Zombie...

Sorry it is so long
Many Blessings
sissy59




147426 tn?1317269232
by Quixotic1, May 27, 2008
Hi, Sissy, Welcome to a kindred spirit.  We caretakers of the tiny ones need to stick together.  You have certainly found the spot where people have had horrible experiences with neurologists.  Yours rank right up there with the worst.  If you have doing any reading on the forum, which I recommend, you know that MS can present all the way into the 70's.  My first symptoms were at 53.

It certainly does sound like you are having neurological incidents of some kind.  But, it sounds like you were dismissed before anyone gave you a proper workup,  I missed any MRI of your spinal cord.  Lumbar spine doesn't count.  You should have had a whole wartload of blood tests to rule out MS Mimics.  Basically any doctor that dismisses or demeans you needs to be "kicked to the curb!"  as our T-Lynn says.  There are smarter, better and nicer neuros out there.

It does sound like you have a negative MRI of the brain.  The report from 09/05 only speaks of an abnormality of some sort in the skull itself, likely related to the arachnoid membrane.  This would not be related to MS.  We know that people - a small number, maybe 1 in 20 - has MS with a negative MRI.  I wrote up a little explanation of how this can occur.  It is in the Health Pages.  Look in the upper right of the page when you are on the Discussion part of the forum for the words "Health Pages."  The article is called something like "How You Can Have MS with a Negative MRI."

Two tests that might offer some information would be two of the Evoked Potentials, the VEP (Visual Evoked Potential) and the SSEP (the SomatoSensory Evoked Potential).

The other entity that could suggest your symptoms is Migraine Variant, which can occur without headache.

Sissy, now that you and I have written so much, I think this is a good discussion for the forum.  They need to read specific discussions of specific problems.  If you will highlight and copy your remark and then Post it as a new Question on the forum, I would copy and paste my answer.  Then more people can benefit.  Would that be okay?

Welcome to our forum.  We have many people as indulted and frustrated as you.

Quix

Avatar universal
by tsbs, May 27, 2008
August 2007 is when it all started.  My husband who was 54 at the time was in very good physical condition.  He could run for miles, plant a garden, bushog 25 acres, he loved being outside.  He was at work one evening and started getting numb down the left side of his body-elbow to hand-knee to foot-left side of face numb also and a headache.  Doctors suspected tia, ruled out, then tested for pfo, showed a small one, ruled out.  My husband has seen 4 neurologist 2 heart specialist. mri, mra, lumbar puncture, blood tests,  the most recent mri 2 weeks ago-normal.  His symptoms have progressed to :
numbness still on left side,elbow to hand-knee to foot, walks with a gait at times
numbness left side of face-deep into cheek
left ear gets hot and bright red, effects hearing, eye jerking
bad balance, tremors, headaches, exhaustion, weakness, memory loss, confusion, disoriented, vertigo
emmotional when symptoms are strong,
Being undiagnosed leaves ? untreated,its only getting worse. meds taken-ativan, depakote, neurotin, cymbalta? Only diagnosis was from a  neurologist-migraines. Meds not helping-symptoms are always there-some days better than others, but none are good.    

Avatar universal
by yorkieville, May 28, 2008
Hi, Quix.

   I am horrified by the way doctors treated you, in your journey to diagnosis! In November, at my last appointment with my Neuro, he behaved like a two year old, having a temper tantrum, because he did not receive a copy of the Neurologists report at Cleveland Clinic, and proceeded to criticize tests and treatments she prescribed. He referred me there!  Her report was sent to an old address, and apparently was not forwarded. It didn't matter, at all, that I had the presence of mind, to bring, my copy of her report.

Recently, my D.O. told me that Neurologists have very fragile egos. I don't understand how there is room for any ego in the practice of medicine. Doesn't the Hippocratic Oath apply to them?!  They do us great harm, when they dismiss us!

  It is interesting that our symptoms began at the same age; 53. I am 55 now. My symptoms began 3 months before my 53rd birthday.

  As you know, things are progressing, it is becoming exceedingly difficult to lift my arms. I wake with upper arm  and left shoulder pain, and yesterday morning, I did my impersonation of an egg. Rich tried to push me forward, and I rolled. It struck me funny, and I laughed, and said, "I am an egg!" He had to lift me around my waist. So, I suppose there is some advantage in weighing 78#s. (Just kidding.)

  We listed the house on Saturday and as soon as it sells, we are moving to S.IL to be near our son & daughter-in-law and twin grandsons. My doctors are being given notice in two weeks, that they have until my house sells, to figure things out, otherwise I am taking my medical records and starting over. My son feels the doctors here are killing me.

  I'm sorry your journey to diagnosis was such a rough road. I just want you to know, that I appreciate all the time you devote to helping us.

Hugs,
Sheila

Avatar universal
by RETIRED53, Jun 11, 2008
If you grew a goatee, was 6'5" tall, smoked cigars, and were a male, that story would be mine with all the symptoms. Thanks for great input.

533898 tn?1213248540
by DRX, Jun 12, 2008
Just wanted to pop in and let you know ( what you probably already know ) people like yourself are too few and far between, you are doing a great service to mankind. Keep up the great job........

Avatar universal
by Jake10, Jun 20, 2008
I understand what you're trying to do and in many ways, it's a great thing. On the other hand, there seems to be a significant amount of finger pointing and blaming on your own part. Not only that, but you are clearly acting as if you knew what your doctor was thinking and implying with his word choices. I have been to doctors and felt as though they gave me looks I didn't deserve or said something that didn't feel necessarily helpful to me as a patient. I, too, had the feelings you experienced and got upset, vowed to never go to those doctors again, and would tell other people about my experiences.
I grew in age and became more knowledgable on the subject of "life" through my journeys just as everyone else does. At some point I started doing a lot of self-reflecting, and I mean every time I had the chance. I started working through past situations that apparently still bothered me for various reasons and put myself in the other person's shoes. I don't mean just one pair, I mean every pair I thought they might have. In other words, we have a multitude of different life-aspects but occasionally we get trapped in a single aspect of ourselves. If we can't break away from this type of thinking it can be detrimental to ourselves and everyone around us. We must be able to acknowledge multiple aspects of our own lives in order stay on track personally. Likewise, we must be able to acknowledge the multiple aspects of the people we come into contact and interact with so to stay on track as a society.
Thinking this way takes time and understanding, and it also takes stepping out of your own shoes which isn't something anyone is very comfortable doing. However, if you take that step in the right direction you'll always be a step ahead...

539156 tn?1281821956
by mary_kay, Jun 20, 2008
Gee, thanks, Jake...I am 61, and "knowledgable" about life. Please don't give us psychological advice unless we ask for it. It isn't appropriate in this setting at all. You don't know anything about the "multiple aspects" of our lives or the extent of work we have done to take care of our mental health as we go through our challenges. Every single person on this site CLEARLY walks in every other person's shoes. Their empathy is evident in every word they write. Do you see us as whiners, perseverating on our symptoms?  I invite you to look deeper...read more of the posts...notice how much love is expressed.  This is a place where we can feel safe to express our concerns without fear of judgement. This is not the time or place for you to change that. Clearly, you have found your path for coping with the "subject of life" that works for you. So have the rest of us.
Mary Kay

222135 tn?1236491821
by pennst8r, Jun 21, 2008
I too feel like I need to express to Jake that we are "as everyone else" very knowledgeable of our "life journeys". Perhaps more so than many. We all had active lives, which have declined due to an ill ness that is not well understood, by the public, ourselves or even by the medical profession who is supposed to treat it. Different doctors will state as fact completely contradictory statements...which ones are correct? Do we not have the right to protest when we are told something that is the opposite of what another doctor has told us? Doctors are fallible and, just like any other profession, there are unscrupulous or lazy members along with the caring ones. While we do chide the unscrupulous, we are just as quiick to celebrate when someone finds a kind and caring doctor.

Looking at your post in the neurology forum (again directed at Quix, I cannot help but notice), I feel compelled to ask if you are also a physician, as Quix is. She knows well what she is talknig about. We trust her judgement and know where she is coming from. Her journal is simply a summary of her journey. She has shared it with us so that we can better understand that there will be obstacles along the way, but that an answer WILL be found so long as we do not give up. What can possibly be wrong with that?

We do not require an invitation to look deeper into ourselves, nor to step out of our shoes. As Mary Kay points out, this forum has the most empathetic souls you could ever wish to encounter. We care deeply about each other, and it shows. Quix is correct; you should read the posts and see the love poured outin them. In case the point escapes you, we are also very protective of each other, especially Quix. She is the heart and soul of THIS forum, for whom the journal entry was written.

I am truly happy for you that you have found your zen. I am glad you have cast aside your demons as regards doctors. As you were afforded the right to have a "process", so are we. We are educated, very strong poeple who ARE stepping ahead. If you are here to judge that about which you know not, please move on to another audience. We are doing just fine, thank you very much.

Penn

539156 tn?1281821956
by mary_kay, Jun 21, 2008
Well said, Penn!   I think you are right when you suggest that Jake may be a physician.  If that is so, Jake, you have my sympathy because I am sure the responsibility of that job is very hard on you.  I only can relate in a smaller way as a teacher...we have some really tough challenges too.   MK

Avatar universal
by johnlopez, Jul 03, 2008
Hello Quix,

Thank you for your very thoughtful description. I have been undergoing much the same symptoms for several years now. I have two white blotches in my frontal lobes, occasional acute episodes of depression (complicated by the loss of my son two years ago), have had several severe episodes of vertigo, an unexplained earache, and more recently, pain in my legs. I haven't felt the "water dripping" sensation. But the blotches, vertigo, and ear pain make me think I should seek a neurologist. I don't know if MS runs in families, my younger sister developed MS at age 40.

Again, thank you.  John

Avatar universal
by luvlife2008, Jul 17, 2008
Hi. I have had symptoms for 13 years. It started when I was pregnant with my daughter. I have had everything from numbness and tingling in my hands to extreme dizziness and vertigo. Currently my face is numb and the underside of my right arm. I also trip a lot. I have been to many doctors and only one neurologist. He told me I was normal and that there was no need for further testing. I have never had an MRI or spinal tap. I did have one doctor tell me that I probably had MS. She told me there was nothing I could do about it so I went home. That was that.
I am having trouble finding someone that doesn't want to put me on anti-depressants and label me crazy. I just want to get better and have fun with my family again. We used to hike and kayak. I am so tired and in pain all the time now that I can't see ever living my life to the fullest again!
I live in Knoxville TN and have an appt with a specialist in October. My blood work always comes back "Normal" I Know it sounds crazy but I actually want to be diagnosed with ms so that I actually have something to call this!!!!!

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by ShadowsSister, Sep 09, 2008
You are amazing, what a Gift you are to all of us. I use to get so tired of some of my first Drs. Saying " I don't Know, you don't act like  Typical MS"...  I always felt like I should tell them I was sorry..;

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by Cre8_it, Sep 14, 2008
Ok Jake has made me want to comment!  When I went to my Dr. I did'nt complain about every little thing that bothered me! I told him about the numbness and burning in my left leg and tripping all the time, also falling down the stairs. I told him about the fatigue, going blind in one eye, then losing most of the vision in both of my eyes.  I told him about the pain that I was in and later the numbness in my left arm.  He did nothing!  Only bloodwork.  He gave me T3s for pain and later I refused to take anymore, hoping that he would help me.  I had to get angry and raise my voice to get him to send me to a neuro.  The neuro said I should have an mri to check for ms.  It was out of province so he wanted my Dr to send me (less red tape).  I waited a yr then found out that my Dr. did'nt put me on the wait list for the mri!  I don't go to the Dr to see how he is doing, he chose his profession, and if he wanted me to go into his office and think about what he was going through than mabey I should get paid half of his pay for that visit!!!  Some Dr.s just should'nt be Dr.s  By the way this Dr. also dropped the ball when my friends 2 yr old had cancer, if she did'nt get a second opinion, her son WOULD NOT be alive today!

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by meg321, Sep 22, 2008
Quix,

Damn, i read about me everyday on here.  i have to read the rest of this when  get home today.  About 6 yrs ago i ened with vertigo and on the vomiting straight up. went to ER and i was sent home telling it was an inner ear problem. I too was in bed for i dont know how long  and now I am just dizzy mostly all the time  I was told later i had suffered  a stroke, but while i was in ER they had a lot of trouble reading a test i had, cant recall what it was, they had to call in someone else to read it but i never got an answer them and was told it was a stroke a little later.  And from then on i have been getting sicker and sicker.  I cant go into more right now but this all so strange. And i was the same i also didnt complain about  everything just what was bothering me at the time.  I am very stubborn unfortunately, but i hate to be labeled a pest.

thanks , meg

Avatar universal
by OperaMBA, Sep 24, 2008
Quix,

I am sorry that you had such a horrific experience.  

My MRI I had on monday, no contrast, was on a 1.5 Tesla machine.   If I am lucky enough to get to the specialist I will push him about getting 3.0 Tesla with contrast!

Thanks for your testimonial and I look forward to speaking with you more.

Richard
OperaMBA

Avatar universal
by Octarine, Dec 19, 2008
Quixotic,

Your post about how to read an MRI was the first one I read and my reason for joining.  Now I see that you have responded to one of my questions and I feel so honored!

I am sorry and shocked that you, an MD, had such rotten experiences with doctors.  Never mind compassion -- what about professional courtesy?  Or is there a pecking order among physicians with neurologists near the top and pediatricians near the bottom?  Whatever, your story, and those of others here, make me want to swear, yell, grab a sword, and lead the charge.  

If only I had the energy :-)

Thank you thank you thank you for all you do here.

Avatar universal
by Totie, Dec 31, 2008
WOW!  You truly are amazing in not giving up. Unfortunately I don't have your strong personality, I am more passive with doctors. I am to scared to question for fear of them getting mad.

I have been mis diagnosed on so many things that I quit counting. Literally.

I posted a question on MKS about Potassium Citrate can you give your insight?

What do you know about Neuromodulation System for treating IC?

By the way ChitChatNine sent me to you..

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by montrealmoon, Jan 25, 2009
I understand your feelings.  I am, or was, a RN, who specialized in neurology, of all things!  I had polio as an infant, and in 1990 was diagnosed with post polio syndrome by my PCP.  Since then, I have been to a neurologist who confirmed, reluctantly, it seemed, the diagnosis by EMG.   As post-polio is a new kid on the block in a manner of speaking, I have come across many health care professionals who aren't too savvy when it comes to knowing about it.  There was even one PCP who told me he didn't know what to do with me or for me.  I also had a physical therapist to whom I had been referred to for post polio strengthening, ask me "what is post polio syndrome?" I should have taken that as a clue and left right then, becuase what she put me through took me weeks to get over.  My PCP finally told me to quit PT, as it was hurting me.  

I have never met more doctors who have treated me with more disrespect, in the way of acting as if I was making it up, or the ones that have told me the pain I was feeling was just normal "aging pains" (I am on morphine daily for normal "aging pains"), or the one that obviously was so uncomfortable with me being there that he refused to ask me questions about my condition, but would only give me my test results in short, concise statements, and stop talking. Period. Then just stand there looking at my husband and I as if he was just waiting for us to leave the office.  My husband and I have decided that if they don't have the answers, and many don't, they are too embarrassed to admit it, and would rather you quit their practice than help you find the answers.  It is too much trouble, they are too busy with patients they do have the answers for who are giving them enough money to support their lifestyle already.  They don't need problem patients like myself for whom they would have to dig for answers, or like yourself.My husband and I have decided that we, like many post-polio patients have discovered, are on our own.

What interested me about your story was the UBOs.  I have had several MRIs with UBOs over the course of the years.  What interests me about that is that my post polio has other aspects to it that are not a normal presentation for post polio.  I have hypogammaglobulinema-I have chronically low IgA, IgG, and IgM, chronic active Epstien Barr Syndrome, new onset visual disturbances, a strange pattern of pain and numbness that can be seen with post polio, but is very rare-I have pain everywhere except the left side of my face. Also, my pain is excruciating.  It is indescribable.  Thank God for the pain clinic and the morphine and the TENS unit.  I also have an electric wheelchair because I can only walk with my cane about the distance of about 4 or 5 store fronts at the mall before collapsing.  I have numbness in my hands, arms, feet, and legs, and sometimes in my face.  I have never had a test of my spinal fluid.  AT this time, I have a herniated disc at the L5-S1 level., which only adds to my pain. Lately, I have been sleeping nearly 20 hours a day.  I have provigil, but don't like to take it as it exacerbates a side effect-oral dyskinesia- I have left over from a psych med I took years ago-for 8 years- that I was left on by an incompetent psychiatrist who put me on Navane but never took me off it, and I, not being a nurse at the time, and not knowing any better, just kept getting it refilled, and apparently, he kept approving it, even though I moved across country.  This, besides the fact that I only saw him twice at the beginning!!  I don't know what is up with the sleeping, unless the Epstein Barr has turned into full blown mono. I see my PCP next week, but I try to stay away from doctors as much as I can.  I don't trust them.  I am thinking more and more that I need a good neurologist, though.

Last summer, I was in the rest room at a campground on Cape Cod, and a lady came in and saw me with my cane and asked me about my disability.  She had a cane too.  She had MS.  She said when she came in and saw me, there was something about me that told her that made her certain that I had MS.  I am not certain that I don't, and I want to know for sure.  

Historically, I have been cured of Hepatitis C, Breast Cancer, Polio-in a manner of speaking, I have asthma, chronic migraine headaches (these have improved with Topamax and Zomig, but have historically been so debilitating that I have been hospitalized with status migrainus; the pain has been vicious and incomparable-- I have vomited so much as to throw my electrolytes completely out of whack and have stumbled about dizzy and weak for days while I tried to build them back up with fluids and food. I also get diarrhea when I get a bad migraine attack, which adds to the electrolyte depletion.  

And I sit at home, uncared for by the health care profession that I worked so dedicatedly for for over 20 years as a nurse.  There is not any help for me because I have such a complicated constellation of signs and symptoms.  Oh, God, how I wish there were a doctor out there who cared enough to take me on!!!

Avatar universal
by 3dayspain, Feb 13, 2009
Thank You for the welcome...just read your story...and wow.. yeah.
For the last year or so I guess i have started to "give up" having any hope to cure my issues.. they are spread over so many areas with so many symptoms; yet the weakness type issues on my left side, muscle spasms, Questionable (lol) images I have looked at, and opinions and stories of others; leaves me yearning for a diagnosis. no matter how bad that diagnosis may be, it would be better than nothing right?
I guess if anything reading your story has given me insight as to finding the right person. Thank you for that.
i just feel that if I don't look for differential diagnosis of my own images than who will? the lesion that was written off by one doctor than used to confirm diagnosis by another gives me even further hope. thanks again.
I have a to be announced appointment with another Neurologist that deals specifically with spine related issues, so hopefully they will help me or continue to lead me in the right direction to be cured.
I wish your treatment continued sucess. That one medication for the fatigue sounds like something I need. All the meds I take add to it :(
well anyways here I go rambling on. All I wanted to do was comment! But thanks for the welcome.

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by fibrotj, Feb 20, 2009
Quix...all I can say is....YOU ARE TRULY AN AMAZING AND INTELLIGIENT WOMAN!!!    I've been reading so much of your material on the 'Health Pages.'   I kept asking myself..."Who is this lady?  Whoever she is...she's really intelligient and knows a lot about MS!"  So, I finally visited your profile, and was glad I did.  I enjoyed reading your story.  I too feel as though I've been "brushed under the rug,"  by those who don't want to take the time to find out the truth.  It's not like it's THAT hard!   Lazy, arrogant, bast$#@s!!   The arrogance of that neurologist who didn't have the decency to treat you with mutual respect!  You got your Doctorate the same way as he did....HARD WORK & DEDICATION!!   urrrrhh!!!  

I've had the vertigo and balance issues, but have only had intermittent spells of muscle weakness.  Most of mine seem to be sensory at this point....although, I sure am dropping things alot lately??  I can also relate to the humiliation of your situation.  I am a Speech/Language Pathologist.  The two symptoms that drove me from my career were cognitive issues and speech/language problems, which actually go hand-in-hand.  Fortunetely, I've only had the speech/language problems during my 4 specific episodes (although I have an occasional slip up or 2), and I'm in my 4th one now.  Although I haven't worked in 2 years,  due to my deficits, I'm fixing to go have to go back to work part-time...2 days per week...7-hour days.   My husband took a better-paying job here in Montana, to help compensate for my lost income.  The only thing is that it was sich a big move and was far more expensive than we had assumed.  So, I'm only going to work long enough to get us ahead.  I don't know that I would qualify for disability at the moment...although, my cognitive issues would certainly be considered a disability!!  I'm really nervous about it, especially since I'm flaring now.  However, they told me I would NOT have to hold any IEP meetings, nor would I be responsible for evaluations.  I'm only implementing IEP's...therapy with the children.  I'm only subing for another SLP who's taking medical leave.  Wish me luck!  

As I've mentioned in other posts...I'm going to ask to have my MRI's repeated as well, because my first set was done on an open machine (with the magnetic ring).  There was a suspicious spot on my C-spine as well, but was never re-screened, as the Radiologist had suggested, if my symptoms continued.  Why are there so many arrogant Neuro's who already have their minds made up before you even get to finish your story???  My last 2 barely even looked at my MRI's, tossed them aside, checked my reflexes, pupils, gait, balance, & memory.  I would have failed the memory test, had they BOTH not have helped me...as if they didn't want me to pass??   I've gotten to the point that I'm just so sick of most doctors...although there are SOME good ones out there who seem to relly care about there patients, such as yourself & my late PCP of 10+ years...rest his soul.    Can't just one of my doctors get it right???   Sorry & please forgive me for ranting!  
~tj

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by Irene5353, Mar 24, 2009
Are you still with that same neuro?  It is telling that you got the same treatment and you are a physician!  I guess there are just some really bad neurologists out there.  I hope that you are getting what you need to survive now.  You are lucky your sister came to help.  Some families just abandon and add to the misery.  I wish you well.  Thanks for all the info.  I have looked high and low on pubmed and paperchase and not seen anything quite so comprehensive and tailored to the question we all ask - especially those of us who are tentatively diagnosed.  

Avatar universal
by buckshot211, Mar 30, 2009
Hey I'm not sure if you know but i was interested to know if you can pass M.S. through partners or if it's possible to get it from another person. Sorry if it sounds odd or rude but my past girlfriend had m.s. and my current girlfriend has scary similar symptoms so i wasn't sure if it was possible. Please let me know, Thanks!       please e-mail me if you wouldn't mind ***@****

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by Quixotic1, Mar 30, 2009
Hi, Buckshot211,

NO, MS is absolutely proven to NOT be contagious.  For many years in the past there was a concern that it could be passed from one person to another, but we know now this doesn't happen.  There IS, however a genetic predisposition that can be passed to children raising their risk somewhat from about 1 in 800 to about 1 in 30 or so.

Emails are bleeped out because note here are public to the entire internet. I will put this same note in your MedHelp inbox.

Quix

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by MsWobbles, Apr 15, 2009
Dear Quixotic1,

I just read your "Journey To Diagnosis."  I didn't realize you were a doctor:  You must have been a very good one, indeed, and much loved by your patients and their families!!  With all the not-so-good doctors out there today, it's a shame you had to leave the field due to your MS.  We need more, not fewer, good doctors!!  But thank God you are here and thank you so much for all the good you are doing with your shared MS experience and insights!!

Regarding your first neurologist, if you have not already done so, I strongly suggest you contact the MS association who listed his name as an MS specialist (was it the MSAA?) and inform them of your experience with that  "arrogant and dismissive neurologist who misread your MRI, erroneously told you that you were too old to have MS, indicated that he thought you were malingering or faking your problems and failed to do the proper work up for someone with weakness and spasticity."  Be sure the MS association knows that his treatment of you was "humiliating and further destroyed your almost non-existent self-esteem."  Insist the MS association strike him from their list of MS specialists.  No telling how many other MS limbolanders you will be sparing untold suffering by so doing.

In fact, as a physician, you might be able to convince that MS association to use another method of compiling their list of MS specialists for referral, rather than just taking names of doctors volunteering themselves as specialists.  It is logical NOT to just accept the names of physicians phoning in claiming to be MS specialists since they might just be some of the biggest losers out there looking for more business.  

As a physician, you, Quixotic1, may be able to convince the MSAA to actually gather physician names from the MS Neuro Ratings website to offer to patients.  Alternatively, they could simply refer patients seeking MS specialists to the MS Neuro Ratings website. I have not yet been able to enter that website, but I imagine it is informative.  I say "as a physician" because your words and insights would likely carry more weight with the MSAA, based on your professional status, than would the equally valid and truthful words and insights of a layperson.

Warm regards,

Weakandfalling













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by Tammy826, May 26, 2009
Wow Quix!! Your story has definately given me hope!! It sounds alot like mine! I've been trying for 3 yrs now & still continue to search for answers. How do you find out what size Mri machine ( or magnet is being used)?I think I have found a good , caring GP this time so that gives me hope also but I'm still leery of Drs. I went from a very independent woman that raised 4 children working road construction to someone who is scared to drive (couldn't pick my foot up off the gas a few times & eye issues) & won't take a shower without someone else being in the house with me. I rarely go out of the house anymore. All those years working outdoors in the heat & humidity never bothered me then bam it hit & now I pretty much have heat as my enemy.I'm am so thankful that I found this websight!! I never realized there were so many like me out there! All I kept hearing was how bizarre my symptoms were from my Dr. & that it was all in my head & I was just lazy (I used to be a workaholic prior to this) from my family.I'm trying really hard to battle the depression but when life as you knew it disappears in a short amount of time its hard to deal with. Its funny how never having any sort of history of anxiety my old Dr. dismissed me as being over anxious. I have another question also if you don't mind, did you ever have daily fevers? I have them daily, usually late afternoon & always lowgrade. Antibiotics don't help & bloodwork doesn't show any sort of infection. A good friend has MS & said she suffered with this also. I don't know if it matters but I have several cousins(2 are twins) diagnosed with MS, my mom has lupus & my dad had type 2 diabetes, oh a grandfather with parkinsons too. Does a family history of various auto-immune diseases pre-dispose you ( I wonder because of my own kids)? Thank you for being an inspiration! I pray that you are feeling better!God bless you!

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by Quixotic1, May 26, 2009
Hi, Tammy, just wanted you to know that I answered you on the forum also....finally, lol.  As far as I know, fevers are not generally a part of MS.  That points more to an infectious or inflammatory (autoimmune) process like Lupus or Lyme Disease.  If the fever is apart of MS it would be in that part of the brain that regulates our body temp.

Get a shower stool so you sit while showering.  AND NEVER, EVER TAKE HOT SHOWERS!!!

A strong family history of autoimmune disease does not predispose you to MS.

Get yourself away from any doctor that dismisses you for anxiety.  Anxiety does not cause this kind of symptom and does not cause the kind of abnormalities you have on neuro exam.

See you on the forum.

Quix

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by Becky559, Jun 07, 2009
Hi, Was just reading this and thought I would tell you "BIG THANKS" for all you do ! Becky

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by cainer, Oct 24, 2009
Just read your post!!   my  my....  i feel fot you.  well they are the drs. so we blindly let them get away with things- i know i did if dr says do this or that it will help. i would do it -  not any more i question everything they say.  well i check it out first!  soooo   glad you started this!!  THANK-YOU!!!    Hugs!!!   tick

Avatar universal
by cassrox, Oct 24, 2009
Thanks Quix for sharing your story...

I went through a similar situation with my first neuro. After he threw me under the bus, I found myself at a point where I didn't want to see another neurologist and take the chance on being humiliated again. But after my most recent flare, a good friend suggested I see an MS specialist that just moved to my area, in Upstate South Carolina. My primary agreed that it was a wise move and made the referral. I've had a three-month wait, but I'm finally going to get to see her Tuesday. I'm still a bit nervous, but reading posts by folks like you and some of the others on here, has definitely helped me muster up the courage to step up to the plate again.



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by KellyMGo, Nov 19, 2009
Yes, I just received the "Are you sure you're not depressed?" comment today at my first neuro appointment.  I said, I'm pretty sure depression doesn't cause you to fall out of bed 2x a week and give you awful muscle spasticity.  I didn't argue.  Sure, I'm depressed, being in limbo and in constant pain without a reason is a sure fire way to become depresse, but it isn't the REASON.  He ordered more tests.  I don't care how "crazy" they think we are... WE know when something is not right with us.  

Thank you for sharing your story.  I have the feeling that my story will follow the same story line.  It comforts me to know that you and so many others have gone through this.  

Avatar universal
by Wind_and_Water, May 02, 2010
Thank you, Quix, for all your informative posts.  You have helped me a great deal.


Avatar universal
by Tootle46, Dec 14, 2010
Hi,
I just happened on this post while looking for an answer to something else. When I was on a visit to Canada last year, there was a full page article in The Globe & Mail on this new treatment for MS. I was very impressed because I know several people who have been diagnosed with MS. Anyway, whatever works and this seems pretty amazing.

http://beatmultiplesclerosis.com/2009/11/surprisingly-simple-cure-for-multiple-sclerosis-possible/

Carol

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