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Avatar universal

More MS testing needed or not?

I was told my MRI brain scan shows no indication of MS.  I have not a spine scan nor spinal tap.  My fear is if I do have MS and it is not diagnosed my "condition" will get worse as it has over several years.  Some symptoms are: fatigue, insomnia, neck ache/stiffness, muscle twitching, hands are weak, numbness/tingles in fingers/toes, head feels fuzzy/face fells oddly numb, dropping things, shaky at times, headaches, eyes hurt (very dry at times), focusing my eyes can be difficult, increase in severity of symptoms on hot days, off balance/disorientation/vertigo, falling down due to lost balance, light
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Avatar universal
Six years ago I began with intense pain in my jaw. It then crept up the side of my face and the left side of my head. I went to my chiropractor thinking something was out of whack. Three days later, along with half a bottle of pain killers, as if something snapped, everything from my shoulder to the top of the left side of my head went numb.

I went to my family physician who said it was a pinched nerve and gave me antinflamatory meds. That was until the following day when I called him to say the numbness have progress down the entire left side of my body. I could only drag my foot. He sent me to a Nuerosurgeon immediately and I had a lumbar puncture and MRI. After that I was sent to a neurologist who reviewed the results, (which included 2 lesions on the cervical spine, borderline MS bands and white blood cells in the spinal fluid) examined me, told me I had MS, put me on Copaxon and steroids and that was that.

Within three months I was as good as new, on a trip to Hawaii, hiking 6 miles across a volcano. No symtoms what so ever. In fact, as it turned out for the next three years, all my MRIs came out normal without any trace of the original lesions - no flare ups, although I did have fatigue, some minor nerve damage, increasing bladder problems, heat and cold intolerance, cognitive problems, tingling, and occasional balance issues. Otherwise my exams were normal. I finally questioned the doctor about "dosen't multiple mean multiple?" He abuptly told me if I questioned his diagnosis I could find myself another doctor. I did.

New MRI from base of spine to top of head showed no signs of MS and physical exam was normal. Yet, symptoms were still there. I too was told it could be fibermyalgia.I was removed from Copaxon.

Then last year I began developing serious memory problems. I would get lost in my own town. I even forgot we had a shopping center five minutes from home. My nuerologist did another MRI. He found several small lesions in the white matter of the frontal lobe of my brain. A few months later a larger lesion appeared on my parietal lobe. The only thing is my spinal tap was highly questionable for MS. Also, in MRIs lesions should enhance with contrast. My do not. My neurological exams are still normal.

His take on this is my first attack was transverse mylytis caused by bacteria. Now, due to some unknown autoimmune disease (which I'm currently being tested for) which is causing kidney disease I have developed white matter disease. I would still be taking Copaxon to be on the safe side but I've deveoped an allergy to it. But, knock on wood, so far I have remained stable other than the fact my memory and balance are the pits.

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Avatar universal
Hi.  You seem to be having a lot of difficulties.  I really don't know what to say.  Your symptoms are different from what I have been experiencing.  I've been hanging out in the MS forum, as so many of us have MS like symptoms but no diagnosis.  

Have you been to a neurologist?  
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Avatar universal
Want to feel well!!!  Any updates on your prognosis?  I really feel for you and can completely understand.  Up until tomorrow, I have never had an MRI, but they were very easily satisfied with telling me it was depression and anxiety.  You would think after all the medicines I was on (listed below) something would have helped if that were the case.  The doctor told me today she believes it's MS.  So far that means I have been told it sounds like thyroid (as you can see by the results below it's borderline low), lyme disease, toxin problems or sinus problems.  I have a deviated septum and a polyp, but I'm sure fixing those won't change much.  Please let me know what you think of my post.

I'm really not sure where to go from here, but I'm hoping someone out there can help me out! After seeing the previous posts in this forum, I thought I would share and maybe we could compare notes and come up with something. Here is my long pathetic story, please forgive me.

I'm a 27 year old male. About the year 2003, I went out drinking one night, woke up the next morning and thought I could have done something really bad (not sure what, but my mind just ran). This was very debilitating and made it so I missed some work. I actually believed I could have done this stuff. However, after worrying about it for a couple of weeks, my life went back to normal. I went to the doctor and was placed on one anti-depressant/anti-anxiety pill after another.

I realized during this time that when I drank, I would worry and think the worst case scenario. It was like I was halucinating for days after consuming alcohol.

Since 2002, I had two daughters, grandma died, got engaged, got divorced, bought a house, had to sell the house after divorce, my ex got engaged two months later and married less than one year later, my parent's got divorced after 27 years of marriage, my daughter was born emergency c-section and hospitalized with pneumonia. During this time I had a job I completely hated. I literally felt like the world was on my shoulder's.

Since 2003 I was on the following medications with little to no help (not on all at the same time, almost one right after the other);

Xanax
Paxil
Cymbalta
Buspirone
Clomipramine (had to go to E.R. on this stuff after one dose)
Clonazepan
Mirtazipine
Zoloft
Zyprexa
Seroquel
Prozac
Celexa
Toprol XL
Welbutrin
Lexapro
Risperdal

In October 2005 they did a TSH test which was 1.74, two months later .94, then 1.20 (range .35 - 4.82. I had a full check up with the following being in the high range; iron/serum, Triglycerides/serum, absolute eosinophils and a low Urea Nitrogen/serum. My other tests; Free T4 was .91 (range .59 - 1.17), T-4 Total 6.4 (range 4.5 - 12.0), T-3 Uptake 34.6 (range 25.0 - 35.0), Free Thyroxine Index 2.21 (range 1.12 - 4.20). My absolute eosinophils was at 608 in 05' and in 06' was at 901 (range 0 - 500) which they say was do to hay fever although I have an allergy shot at least once per year.

In April of 2006 I was scheduled to have my gall bladder taken out, however; they put me under and stopped the surgery on two separate occasions as my carbon dioxide levels were way too high. I was sent to a cardiologist who said everything was fine and okayed the surgery. They went through with the surgery.

My latest tests are (although I have no idea what half of them mean);

I have been tested for everything under the sun from thyroid to CT scans. I was diagnosed with sinusitus and was prescribed Avelox 400 mg per day and Ru-Tuss twice daily with no help what so ever. The one that sticks out the most is the Homocysteine level....pretty darn high.

My results and ranges;

% Saturation 55 Range 20-55
Homocysteine, NUTR/Congen 45.8 Range 5.4-11.9 umoL/L
Cortisol Binding Globulin 31 mg/L Range 19-45
Methylmalonic acid, Serum 229 Range 87-318 nmol/L
Sex Hormone Binding Globulin 26 Range 7-44 nmol/L
T3, Reverse 0.19 Range 0.11-0.32 ng/mL
Renin, Plasma activity 1.9 ng/mL/hr
T-3, Free 377 Range 230-420 PG/DL
TBG 14.6 Range 12.7-25.1 mcg/mL
Iron, Serum 179 Range 45-175 MCG/DL
Ferritin, Serum 227 Range 20-345 NG/ML
Folate, Serum 3.4 NG/ML
Vitamin B12, Serum 253 Range 200-1100 PG/ML
Free T4 0.73 Range 0.71-1.85 NG/DL
TSH 1.39 Range 0.50-5.00 uIU/mL

I have now been placed on B12 injections and take 5,000 mcg of B12 sublingual daily when not taking injections, Vitamin D3 (cholecalciferol) 5,000 IU per day, 4 caps per day of B Stress Formula to give 200 mg of B6 and 800 mcg of Folate, 4 caps of Omega-3 fatty acids, 1-4 caps of Taurine. I also currently take 20 mg of Prilosec for Acid Reflux disease and 10 mg of Ambien to sleep. My physician wants to start me on Cytomel for thyroid and Cortisol.

In the past I have had gall bladder surgery, double hernia, throat dialations, numerous concussions and lymph nodes biopsyed.

I have so many symptoms it's not even funny.

My typical day;

I wake up exhausted, but feel better after waking. It always seems one eye is bigger than the other. I have actually had people comment in a well lit gym that I looked drunk or something, as my pupils were so dialated. However, I have seen to eye doctors and both say they look perfectly normal. Throughout the day I sweat like a pig and feel very heavy (even when only doing minimal things). I feel very stiff in my movements, off balance, feel like everyone is watching me, because I feel so off. My eyes feel like I am squinting half the time and after this they feel like they are going to pop out of my head, as it feels like so much pressure behind my eyes. When I turn my head in either direction my movements feel choppy. Like I'm in slow motion...this gets my nervous system going in overdrive. I get the same feeling when I focus on something like the computer screen, but when I read, my eyes feel like they are jumpy, moving constantly. I get very nervous, parnoid (not that the CIA is coming or anything like that). I feel so slow and almost like I am staring. My movements feel so off. When I go into a store I feel so nervous. My body feels like it's going one way while my mind is going the other. I get tingly sensations in my hands and feet after a very short period of time. I feel like I can't hear very well anymore and everytime I talk to someone they have a tough time hearing me. It's almost as if I don't recognize or know the strength of my own voice anymore. My ears feel clogged up and pop constantly (like when you have a drive through the mountains). My throat has that need to be cleared feeling (although there is nothing to clear). By the end of the day I am so tired and wore out mentally. I literally don't feel comfortable leaving my house anymore. I have that impending doom, everything is so overwhelming feeling. My ears pop and hurt all the time and off and on it causes me to feel like I have a sore throat. I have basically quit doing things with family and friends. I would love to more than anything, but I feel so strange around all them. I could just cry half the time, as I don't know what to do from here.

Whatever this is, I feel it stems from the way my eyes feel. They feel like if you were to keep your eyes crossed for awhile, plus the feeling of popping out of my head. When I try to take a nap during the day, my body literally shakes, I sometimes hear a loud popping noise that wakes me up, I feel like I become numb and although it feels like I slept for hours, it's been minutes.

When these feelings are at there worst during the day, I almost feel like the left side of my body is not functioning properly. It feels like I am dragging my foot and my arm feels uncordinated. Basically I feel like I have a slow onset of mental retardation. I am more irratible, my anxiety is bad, I zone out quite often and my depression has become bad, but I feel like all this is stemming from something else.

The problem I have is that nobody notices this stuff but me...any ideas on that?

Any ideas, comments, suggestions, related experiences?
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Avatar universal
I think you may have misinterpreted the argument on antidepressants.  I understand that many people diagnosed with MS take antidepressants, however I find it quite apathetic on the part of many physicians who prescribe antidepressants even before any type of diagnosis is made or testing has been performed.  As it has been stated in these forums, a psychological diagnosis should not be considered until all other possibilities have been ruled out.

Have you posted in the MS forum?  Your experience and suggestions could be useful over there as well.  Hop on over if you
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Avatar universal
Thanks for the info.  If it's MS then it's the worst kind.  I don't have relapses and remissions.  I have constant, daily symptoms that never go away, change from hour to hour, day to day.  I've seen 5 neurologists and an MS specialist.  Not one of them thinks it's MS.  In fact, the last two did not even have it on their differential.  I've been convinced that's what it is but not one test has shown anything.  I've had 3 MRI's of the brain, 3 of the cervical spine.  MRI of entire thoracic and lumbar spine, evoked potentials, 2 EMG's and a spinal tap.  Every test was normal.  I just don't know what to think.

Patsy
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Avatar universal
I have definite MS.  I was diagnosed definite before all the tests were performed.  One thing you may not understand fully is that there is no definitive test for MS and that most all MDs will wait for repeated events/symptoms that are seperated in time from one another.  Since both of you list so many general complaints the key for diagnosis is going to be time, duration and remission.  MS is diagnosed this way.  You both should keep detailed logs of your symptoms, including when they start and when they end, and categorize them from Mild to Severe.  The tests are used more for ruling out other conditions than they are used in diagnosing MS.  Punch in the McDonald criteria into Google, this is pretty reliable and commonly used to diagnose the disease.

As far as anxiety and depression and MS.  Many MS sufferers suffer this too.  Not necessarily for the reasons you think.  MS is a disease of the brain.  It damages the brain.  Sufferers can become depressed because of the damage.  Also, treatment for MS, primarily interferons add to depression.  So don't get all worked up if the Neurologists puts you on an anti-depressant, its fairly common for MS.
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Avatar universal
First of all, I am sorry you are feeling so bad.  It sounds like this was thrown on your plate rather abruptly.  Or has this been something going on for awhile?  Was it your GP who told you that it might be MS?  Unless you have a definite answer, don
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230017 tn?1189755828
I am new here. I was told several day's ago that I prob. had MS. I had a LP done after my vision suddenly became blurry overnight. I had a vision exam last week, my doc said I didn't need new glasses. She sent me to the e.r. The e.r. doc said my cfs protein was really high. The ct scan was clear, but he said I need an MRI. He referred me to a neuro, which I see next week.
      I don't know what to think. I am a paramedic and have been for over ten years. I need my vision to be perfect, now I can't even see clear enough to paint my nails. It's scarey to even try to imagine myself trying to start an IV or give a patient meds. The vision loss happened overnight. I have RLS, fatigue, ( which I assumed was due to my job), and a few other s/s. My family thinks the doc is wrong. I know the medical aspects of MS, but I don't know anyone who has the disease. I never knew how it felt for my patients to be told that they had a disease that would change their lives forever, until now. I am still "in shock". ( I knew something was wrong, but I never expected this) I only wish I could go back and hug every paitent I treated......
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Avatar universal
The clown nose made me laugh.  Good luck on Monday.  Let us know how it goes.  :)
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Avatar universal
Hopefully it will not take that long to get into the Mayo!  They sure tried to lift your spirit.  Why does all this negativity have to go hand in hand with medicine?  One of my favorite movies is "Patch Adams."  I think more doctors need to learn from him.  Becasue of that movie, a few years ago I started carrying around a clown nose to use as needed.  My husband is mortified when I whip out my nose out in public.  It is really a lot of fun to wear it at a drive though window.  Some people will ignore it, others laugh.  We all need to laugh more!  I had considered putting the nose on at the neurologist's office, but my husband made me promise I would not.  

I'm just waiting for Monday when I see the neurologist for the first time.  I had posted somewhere that I found out he was one of the best, and an MS specialist...heard from a patient of the neuro group I am going to.  That put me at ease.  

  
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Avatar universal
I am going to go ahead with the MRI, and during that time, I am collecting all my records that I don't already have.  From my neurologist, ent, gastro, general, chiropractor, anyone I have seen.  I don't want to go in there and repeat all these tests if I don't have to.  Especially the LP.  I want to go in with as much information as I can.  The neuro did say that even if they write my referral it could be a long time before I get in.  So we shall see.  

Where do you stand as of now?

Big hug to you as well.  I know the feeling of wanting to feel well.....    
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Avatar universal
Arrggghhh!!!  Of course you would cry!  Your body feels awful and when you try to find a real answer they tell you to take this little pill that will take all your cares away!!!

I'm sorry, but as soon as you said you started crying I knew what their next response would be.  This seemingly routine answer is soooo demeaning!!!  What did they do before SSRI
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Avatar universal
Well, after the good news on the lp, we kind of went back and forth, I want a referral to mayo, and they seem to think I am crazy to want one, or egos are upset that I want to move on from them.  They gave me some muscles relaxers to take daily, which are impossible since I have to work for a living, and upped my magox and topamax intake.  Went this morning to recheck my b-12 count, and they are scheduling another mri.  I was so frustrated, I started crying, which then of course lead straight to the "you must be stressed out" conversaton, lets put you on stress medication.  I am stressed out because I always feel bad!
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Avatar universal
That's good!  Now what direction will you persue?
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Avatar universal
Went to the neuro yesterday.  The LP results came back GOOD   :)
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Avatar universal

Twitching, numbness & tingling can all go along with fibro. I have CFS and in the last couple of years have also had some tingling and numbness. I guess it makes sense knowing that CFS affects your nervous system... also the endocrine system and immune system. Not to mention those CFS patients', including myself, who have orthostatic intolerance/BP issues.



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Avatar universal
I looked at that website.  If I ever have another spinal tap I want that run.  I'll pay for it myself if I have to.  I have been diagnosed with both CFS and FMS and I do have a multitude of MS symptoms so maybe is the CFS part causing all the numbness, tingliing, twitching etc?????
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Avatar universal
My thoughts are with you for tomorrow!!!  Hopefully you'll have answers and solutions.  Best wishes...


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Avatar universal
"An alarming number of CFS patients are misdiagnosed with multiple sclerois (MS). The severity and symptoms of chronic fatigue syndrome (CFS) fluctuate and sometimes mimic the relapses and remissions of MS. In addition, when health care practitioners suspect a patient has MS, they almost always refer the patient to a neurologist, who then sends them for magnetic resonance imaging (MRI) testing. Today, unusual cerebral white matter on MRI tests often automatically leads to the diagnosis of MS."

"In a review of 366 patients referred to me who had been diagnosed with MS by a board-certified neurologist, only 236 patients (65%) had been correctly diagnosed. An astounding 28 (22%) actually had CFS."

Dr. Charles M. Poser, MD, FRCP (GLE)
Visiting Professor of Neurology,
Harvard Medical School

(posted on the CFIDS Association of America website)


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Avatar universal

To diagnose MS, neurologists do the MRI and/or a spinal tap on the patient. The problem is though that some CFS patient' were misdiagnosed as having MS, because many CFS patients' also have abnormal MRI's. In addition, MS patients' have low uric acid levels --- but then again, so do CFS patients'.

It didn't surprise me when I heard the CDC announce that CFS can be as disabling as MS. MS and CFS do share many characteristics and are sometimes mistaken for each other and if I remember right.... we both have the same bacteria in our tissues & cells. (mycoplasma)

If you truly want a diagnosis --- there is a national lab that can test you for CFS and FIBRO, but like MS, the test requires spinal fluid. The lab test is currently a research lab test, but I think I read recently that Medicare will pay for the test. I'm sure insurance companies will not cover this test at this time. The name of this lab is RED LABS, USA... they have a website if you are interested.




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Avatar universal
I also feel MS has not been adequately ruled out.  I posted that way at the beginning of this thread.  I agree with you.  If I remember, I think a brain MRI was the only test performed.  Hopefully, Want to feel well!! has a good neuro appt.
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Avatar universal

Hi Quix,

MCS stands for multiple chemical sensitivity.

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147426 tn?1317265632
Hi, you and I have never talked.  What is MCS?   I also do not think MS has adequately ruled out.  Quix
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Avatar universal

Speaking of brain fog.... I meant to write FIBRO, CFS, MCS and/or lyme disease category.

You see... I never used to do this before. Brain fog and these conditions are very real !
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