If not MS, than what?

[canchaser14]

after 2 years of "limbo" and testing and being a guinea pig, we are very short on specialists in my area, and I would love an opinion from a neuro on what direction to go in.MS has been suggested to me several times. Here is the short version, I have been dx'd w/ Lupus 15 yrs ago,Fibro13yrs ago, Hatchimotos last year, and about 3 months after I received several blood transfusions I started developing severe neuro sx's.I had an episode (my first one) where I was laying in bed, felt a stabbing pain up my spine and when numb from the knees down and then my entire face from the eyebrows down. I couldn't speak or anything. I was medi-vac'd to baltimore,given IV steroids,sent home w/ oral steroids, muscle relaxents & pain pills. I felt better after a couple weeks.From that point on, these episodes have acurred frequently. I also have severe stabbing/sharp chest pains and the cardiologist said not the heart, he thinks neuro.I have stabbing pains in my jaw and head that go into my eyes nearly daily. I have bad vertigo, my memory is going, and my coordination is getting worse. My MRI didn't show lesions, but they put me in the open MRI which I understand doesnt show images as well as closed.I went from training horses a yr ago to needing a cane some days now just to go to the store.The heat & humidity make it worse.I have throat spasms often where it mimiks a panic attack- my throat will just start closing up by itslef. When I have really bad episodes, my body shakes and feels as if I am freezing until the "seizure like" thing goes away. My hands and legs go numb sometimes. Ideas?

[BeSweet]

I began writing this comment by giving my history, and suddenly it all disappeared.  I will wonder why for some time, but consequently, I decided to get to my point, instead of ... well you know.

For a definitive and accurate assessment and diagnosis of MS, LOOK FOR AN MS SPECIALIST - NOT JUST A NEUROLOGIST!!!  

I can't emphasize this enough.  And don't let them fool you... many neuros will say because they've treated many MS patients they consider them specialists, but there is a real difference.

MS  has so many symptoms that mimic dozens of other diseases, so many of us go through years of being driven crazy while unknowing, albeit well-meaning, neuros and MDs try to figure it out.  GO TO AN M.S. SPECIALIST!!!  even if it means traveling to another city, or going out of your insurance network.  It's worth it!!!

BTW, nothing I read in all of the posts here were unfamiliar to me.  I have MS (5 years Dx now) and my mother had it for over 20 years.  (She died of complications thereof in January.)

A good site to go to for LIVE CHAT with other MSers is www.mswatch.com    There is almost ALWAYS people there chatting about what's going on with their MS, etc., and they have boards like this, and professionals to help answer questions, plus formal LIVE educational programs online.

Check it out.  Blessings to you all and prayers!!!

[englandwidow]

I'm 36 yrs old and have worked hard all my life till about a yr ago when I suddenly went down hill. I've ended up with all the following symptoms: tremors, pain all over, weakness, inability to think, remember, concentrate, lack of coordination and confusion, stuttering, leg pain (both legs), numbness in extremities, headaches, sharp stabbing pains various parts of my body, sensitive skin w/crawling sensations, sensitivity to light and loud noises, haloed vision,frequent urination, constipation followed by diarrea a few days at a time, inability to sleep or stay asleep. I'm unable to walk more than a few steps before feeling like I'm going to fall down. All these things happen daily, I recently decided to go see a neurologist when I had been awoken by the sensation of one side of my face feeling like it was asleep. I've had an MRI w/wo contrast and found numerous lesions on my brain. Been tested for visual and came back negative, spinal tap came back normal. Blood test came back normal. Meanwhile, I'm unable to work or do much more than sit around the house and wait. I'm unable to get assistance financially because the only diagnosis I've been given in the last yr was fibromyalgia and that's not enough to deem me disabled. My Dr thinks this is more than fibromyalgia but the neuro isnt giving any suggestions, just that I don't have MS. Any suggestions anyone? Thanks

[Karen52]

My b-12 is normal. My Lyme had only one positive 39kDa - IGG all of the other bands for lyme were normal. They say to retest in about 4 weeks. My sed rate is 30 (I'm 52 years old but I still think that's high). My MRI showed 2 small white areas deep in the white matter of the the left brain. I have a positive test result for Acetylcholine receptor modulating antibody with a result of 40. I think this is a borderline indication of myesthinia gravis. What else could cause a positive result here? I read that there is some kind of connection between MG and nicotine receptors -  any more info on that for me? I quit smoking 3 mos ago...Will be getting a spinal tap, muscle conduction and possible muscle biopsy...Is there any reason why a doctor couldn't just treat me with antibiotics and steriods? Could that possibly hurt me? No one is helping me and I'm feeling HORRIBLE...

Thanks for any info...

Karen

[Tidbit]

Today is the first time I have been on the Neurolgy section, I have been on the Stroke Rehab. many times.  The reason I came on this section is because today I was dianosed with MS.  I am still shocked! But I will say, I am determine to live my life to the fullest.  I think a lot of time, when you are diagnosed with a horrible disease, you can really go into a deep depression, I have seen friends and family do that to themselves.  But I have luckly been around people that you wouldn't know by looking at them that they have an incurable disease.  I'm not Ok with having this disease, but you know you just never know anymore, what life has to offer, you either make the most of it or you don't.  This section has been hard on me to read, a lot of people on here are negative about MS, I have to agree, MS is a negative disease, but people that have MS have to be encouraged.  Like my Neurologist told me today.  I care about you, I am here for you, I will listen to you, I won't allow you to be in pain,  there is so much technology out there now, that people with MS can lead an almost normal life, he told me not to worry.  Not to worry, that is easier to say than to be the one that has MS.  And to think I am only on the mild side of MS, my MS symptoms, although very bad is just the beginning, but you know if I wasn't diagnosed with MS I could have been diganosed with an even worse of a disease, or who's to say you  could be walking a long and get hit by a bus, or be paralyzed from the waist or worse neck down. I have a friend that was diagnosed with MS in the 80's, she is on proper medication, and she works in a bank, you don't even know that she has MS, unless you knew, and you looked for it, but it isn't that noticeable.  So she has been a great inspiration to me and the ones around.
Tidbit

[lchelsemom]

MAKE SURE YOUR DOCTORS HAVE TESTED YOU FOR B12 DEFICIENCY!  I was given the diagnosis of MS many years ago..  A few years later,  I went to a different Dr. and he discovered low B12.  Symptoms of B12 defiency mimic those of MS. Everything everyone is writing about could be caused by low B12.  If inded low, the treatment is B12 inections.

Hope this helps =

Linda S.

[litting]

I think i have the same problems as karen52. I have facial numbness, burning sensations in hands and feet both sides but worse on the left, frequent urination and inability to sleep. I went to see hospital and they will only let me do MRI and NCS test one month later. I am vy scared and dunno wat to do. Pls help me...

[Jackmmr]

Please Help.

  I am 43 male. My most recent symptoms started the first week of July at work where I usually have alot of energy as the job is pyhsical. It was like I hit a wall and had no energy at all. Seen my Dr. the next week were I had no reflex in left leg, blood test were elevated tcell count, I often sweat on one side of face as I am now writting this post, dizziness and heart rate of 132 one ekg normal blood ressure 110/80. having trouble concentrating and typing with coordination. Seen a Neurologist the following week and all the same symptoms. Checked my eyes for a long time I thought. Then he said I need MRI AND GETTING IT ON 16 sEPT. Any help would be greatly appreciated.

Thank you Jack

[Karen52]

My father died of MS in 2000. I had an episode back in 1993 that lasted until approx 1994. The symptoms lessened until I felt almost completely well. I was never diagnosed with anything except possible fibromyalgia. Now here it is 2005 and I am having  symptoms again but they are a little different this time. Facial numbness, burning sensations in hands and feet both sides but worse on the left. Constipation, frequent urination, inability to sleep, Coldness in limbs or burning or sharp pains. Symptoms wax and wane and are ususally worse in the evenings. I'm suffering from mental confusion also. The other day I was driving down the street and I forgot why and where I was going. I was very frightened. Then the other day I couldn't comprehend what a customer was saying to me or how to help them (at work) it was in reality an easy typical call. My body was numb on the left side from foot to top of head. The paramedics took me to ER. Now I have no sick time left and without a diagnosis I will not get help from FMLA... Monday I have an apt with a neurologist...what should I do? They didn't diagnose my father until he was falling down and wetting his pants.  Is this going to be the case with me too? I am really scared.

Karen

[CCF-Neuro-M.D.-PW]

You certainly have concerning symptoms which warrant an evaluation. I cannot give you a clinical diagnosis over the internet, unfortunately. MS could be a possibilty and to pursue this the usual testing involves an MRI of the brain and cervical spine, spinal fluid analyis and visual evoked potentials.

The Mellen Center for Multiple Sclerosis at the Cleveland Clinic is very experienced at sorting out MS like symptoms and doing the above investigations - perhaps a second opinion there would enable a diagnosis to be made.

[slg]

Hi, I am a 41 year old female that has been struggling with all the symptoms of MS over the last 20+ yrs. I have had 6 MRI's done within this time frame.Each time the test came back negative. Every Doctor I saw said I was depressed and put me on various meds. In April of 2004 I was dining with some of my co-workers when I became very ill and excused myself from the table and went into the ladies room.At this time, I fell to the ground grabbing my chest and thought I was having a heart attack. After about 20 minutes I forced myself to get up and join my co-workers and returned back to the office. At the office I continued to feel dizzy and not well at all. I refused to have them call 911.The proceeded to call my husband to come pick me up and at least take me home. When my husband arrived he told me he was taking me to see my family MD. They did a EKG and brief examination. They told me it was normal and said go home and rest. My doctor left the exam room and when he returned he looked at me and told my husband to take me straight to the hospital. I spent two days there going through a complete cardiac work-up and tests. The pain continued even with nitro tabs and with meds for acid reflux. My doctor sent me home. I continued to have these pains that would last for a few days and go away.Plus the slurred speech, difficulty swallowing, and the list goes on. At the beginning of Sept. 04 I went back to my doctor and told him of my continued episodes. He said he would run some more test. On Oct. 1,05 one of my friends was getting married.While following everyone out to the reception area I just fell down a couple of stairs for no apparent reason. Totally embarraced, my son helped me up and of course we laughed about MOM being such a "clutts". The following day on Oct. 2,05 my husband and I rode down to the nearby park with our sons, they rode their bikes and we rode our motorcycles.I was not quite feeling like myself, but thought it was because we were up late because of the wedding. I played a few games of tennis with my boys and told my husband I was going to take my motorcyle for a run and I would be right back. I proceeded to pull out of the parking area, making sure there was no traffic coming and that was the last thing I can remember until I see Doctors running around me like a chicken with its head cut off. The words I remembering hearing is you better get her there or she won't make it. I was then flown to UCDavis in Sacramento, Ca. I had internal bleeding, blood clots, crushed pelvis, torn ligaments, and the list goes on. I can't say nothing but good things about them. They saved my life.After many surgeries and alot of therapy I'm 98% percent ok, at least from my accident. My speech, hearing,vision, and walking is continuing to decline. The funny thing is I'm a optician so I ordered myself a new pair of glasses a couple of days ago and I can tell its not much help. I'm afraid to really talk about this to my family since its always been there is nothing wrong with you "per the DOC'S", here take these pills cause your depressed. I have decided to go back to my family MD and let him know my concerns again, and be retested I hope. I didn't mean to ramble on, but just needed to vent. Please remember me in your prayers and wish me well.



                           Thank you for listening

[canchaser14]

You may want to check out msworldboards.org  I have been spending a lot of time there. You do not have to have an MS dx to talk there. And it is a wonderful place to go when you need to feel "normal" or like people understand.

I hope to see you there. I am under canchaser14 on there as well.

[canchaser14]

I just found out that my neuro here recommends I go to a teaching hospital where they can study me and see what I have. He and my PCP seem to think I have something rare that may not have a name yet. Sadly, I am in terrible discomfort and pain most of the time in the meantime, because no one will treat me. Is there someone at cleavland clinic interested in working with an auto=immune nuerologically ill person that the closest mold I fit is MS?
Desperately seeking help, and my life back. I am only 30 but spend most of my life trapt in my home. This isn't me. I have gone down hill quickly in 1-1/2 years. What is wrong with me?

[Kikko]

Hi, I just read your post to the Neuro.  I felt so bad to read all your problems.  You have given me so great words of wisdom, I wish I had some for you.  I will keep you in my prayers.  Kikko

[canchaser14]

Just another note--- blood work is run regularly and showes positive ANA- nothing else wrong.
Cardio cleared me saying neuro related.
Oral surgeons say neuro related
ENT says Auto=immune possibly neuro
GI yesterday after upper and lower scope says everything looks good to him, must be neuro.
What the heck?