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MS symptoms, but negative tests. Which way to go?
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MS symptoms, but negative tests. Which way to go?

Hi.  Up until last August (2005) I was a healthy, active female who had just turned 40 years old.  My only significant medical history was thyroid removal (surgically, not radiation) at age 16 due to hyperactive thyroid (since that time I have taken synthroid on a daily basis), an appendectomy at age 34, and a few bouts of food poisoning.  Also, I had very bad monthly headaches at ovulation and menstruation but have virtually eliminated them for the last 14 years by taking magnesium supplements (which I continue to take).  I have 2 grown children (ages 20 & 22).  I am white, 5
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First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.  The symptoms/story you describe is not classic for any particular disorder, and thus your evaluation needs to be taken to the next level to evaluate for less common diseases.  
  It would be uncommon for multiple sclerosis (MS) to present in this way.  MS can be tricky to diagnose at times, and some "variants" will have a negative MRI brain, but have positive findings elsewhere (For example: Devic's affects the eyes and the C-spine, not the brain).  However, the symptoms that you describe appear to involve the brain as well, making this explanation unlikely for you (face and vision involvement). The only test for MS that you did not describe was a visual evoked potential (evaluates for past optic neuritis) which may be helpful given your past history right eye blurring.
  For the question of lyme disease, I would recommend a trial of antibiotics.  Your symptoms are compatible with lyme disease and tests can often be negative until treatment is started (the agent that causes lyme (Borellia burgdorferi) is immunosuppresive).  It may not turn out to be lyme, but a trial on antibiotics is low risk and potentially very helpful. I would also recommend a SPECT scan of the brain (lyme can cause vasoconstrictive disease that causes dysfunction without MRI abnormalities).
  Given the symptoms you describe, I would recommend a some screening lab work to look for more uncommon diseases that can cause similar symptoms including urine porphyria screen, anti-thyroid antibody panel (you could still have antibodies even if your thyroid is removed), paraneoplastic panel (looking for antibodies against occult tumors), ACE for sarcoid, EEG for seizures, Lactate and pyruvate from the CSF and blood (for mitochondrial disorders).  Serum and Urine amino acids, urine organic acids, ammonia level(metabolic workup).
  Stress can also cause some very strange symptoms that can mimic neurologic conditions.  This should only be considered after the testing is complete, but does happen and should be kept in mind.
  I would also recommend that you take your case to large academic Neurology department in your area.  You will need the best minds you can find to help you.  I hope this has been helpful.
19 Comments
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Avatar_f_tn
You sound exacly like me.  I've been like this for over a year now continuously.  I've had all the tests you've had plus thoracic and lumbar MRI's, evoked potentials, EMG of legs.  Everything is completely normal.  The spinal tap was 2 months ago during an episode of left sided weakness, numbness, tingling.  Completely normal.  It is just so stressful to deal with this with no answers.  I also had a similar episode like this in 1993 (7 months after 3 bullseye rashes).  It lasted 5 years then resolved, only to return last year.  I am taking lyme treatment right now although I have never had a positive test.  I've seen 3 neuro's, all say no MS.  I have an appt. at Cleveland Clinic in a couple of weeks at the Mellen Center.  It's my last resort.  I definitely know what you're going through.  I'm 43 yo female from Ohio.
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wow...you sound just like me....and just like patsy....i have had all the testing done for MS...including Lumbar puncture...4 MRI'S...the works...nothing has ever showed...two neuroligists have said I do not have MS.  Even the neuro from the Boston Leahy clinic who specializes in MS said its not MS.  I understand exactly how you are feeling.  My symptoms are very similar to yours and i have had episodes of getting better then worse.   I decided to look into lyme and was given a clinical diagnosis of third stage Lyme so I am in treatment for that.  It was very hard finding a doctor who would believe lyme disease is what I have....testing often comes back negative.  Did you test with Igenex?  Look up lyme and see if your symptoms fit.  Good luck and let me know if you have any questions.

***@****
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My first episodes with MS started back in 1998,diagnosed august,1998.I dismissed the fact of MS recovery from a lumbar surgery.Not another episode until 2005,the first few MRI's were clean,evoked potentals were borderline at best.Lumbar puncture was positive for myelin basic proteins.I was completly frustrated with numbness,weakness,freguent falls,visual disturbances,fatigue and heat intolerance.I was rediagnosed by better MRI's and specialist at the cleveland clinic.I have not yet followed up with the mellon insitute.I have a good DR locally.Sometimes it can take a while for the lesions to appear and in my case they healed,but left me with occipital atrophy effecting my vision.
I never thought the rollercoaster of diagnostic test would ever end.But everything under the sun was ruled out.
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i had symptoms of numbness and tingling in my left toes, twitching in my left eye and episodes of vertigo. my physician had me do a brain scan for MS, but it turned out i had an Acoustic Neuroma. a small, benign tumor on my acoutic nerve. (i had surgery to remove it last april (05) in LA.)
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To the physician - Thank you so much for your thorough and detailed answer.  You certainly provided me with some guidance and direction.  I had already decided to actively pursue more testing and evaluation of Lyme Disease (and you confirmed I am not wasting my time).  The more I read and hear from others about it the more it stands out as a real possibility.  Based on your response beyond Lyme, I guess there is a lot of testing to go through.  I am also glad to hear you do not think it is MS.  I do not either, but my neurologist is really stuck on that potential diagnosis (to the point of not looking for anything else).  I guess your suggestion to move on to another doctor is what I need to do.
To the others that have posted
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Avatar_n_tn
I also had similar symptoms.  I have had several test done also to no end.  My numbness started on my forhead and then went over my whole body or the course of several months.  The numbness is in patches which doesn't seem to fit any neuro symptoms.  I can scratch my skin and not relieve an itch.  My dr thought it was MS or lesion but all tests are negative.  I have had no inprovement.  I am still numb.  I also have spells at night that wake me from a sound sleep.  I wake up to find that I see patterns and colors covering my entire vision and my ears are ringing.  I feel strange.  I go back to sleep easy.  The dr's thought i was having seizures but ruled that out and said it must be mirgraines but i have no headache.  Finally some dr said it was small fiber neuropathy caused by either a virus, bateria or chemical inbalance.  And that was that.  No one told me how this could have happend or why or if it happened or if it will get worse or better.  I think dr's make an educated guess and if you are happy with it so are they.  I still can't feel parts of my skin and no one seems concerned but me.  I hope you find out what's wrong. Your symptoms gave me more ideas to follow up on.
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Avatar_n_tn
Hang in there and be strong! It can be very frustrating to be extremely sick and have no clue what it is! I have simuliar symptoms along with severe fatigue. I have lessons on my brain but nowhere else, So I was told  I have a small case of MS, but theres not enough evidence thats exactly what it is so no treatment for me! One thing I have found helpful is rest as much as you can don't over do it, as doing that for me causes bad pain in me legs and arms. Hope things work out for you!
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Avatar_n_tn
I've been searching and searching for help and have not found any.  I can't tell you how many hours I have spent on this damn computer looking for the "aha--that is it".  The more and more I read--I am convinced that what I have might be Lyme.

My story:

Not sure what are related or not--

Healthy 34 year old female.  In July 05 I noticed strange painful blisters on my fingers.  Told my my derm that it looks like dyshydrotic exzema (eczema)--but it HURTS, doesn't itch.  Shortly thereafter I can't wear tennis socks because the elastic hurts my ankles.  Then I start to notice that it hurts to lift somewhat heavy items---then hurts to wrap floss around my fingers.  It leaves dark welts.  November 05 feel more tired than normal.  December my hands and feet feel like they are BURNING--like someone has smeared capsacin all over them. I can't tolerate blankets any longer. I can barely handle the heat from clothing on my skin.  Feb 06--clothing feels like sandpaper.  March 06--headaches everyday.  May 06--deep muscular pain all the time in arms/legs/shoulders and serious fatigue. Now I have bouts of vertigo as well. July--strange intermittant tingling in my ankles/tops of feet.  Kind of feels like they are sleeping--that similar "buzz".  Doc suspects MS and orders MRI of brain.  Husbands dad is a Neurosurgeon and tells us that basically there is one teey-tiny spot on my brain and we should just watch it.  Inconclusive.  I am going to see a neorologist in two weeks.  

Does anybody have any comments?  I am going absolutely crazy here.  I am not nuts. Thank God I have an internist and dermo who know me and know I am as sane as they come....

I'd love to get to Mayo or the Cleveland clinic but my insurance only pays a small percentage for out of network. Modern medicine today is HORRIBLE at diagnosing anything out of the ordinary.

Thanks for the help and support!
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Avatar_n_tn
Hi All, this is my first post here, so please be gentle.  After reading your posts, it took be back a few years when I had alot of trouble from weird, wonderful, and downright painful mysterious things happening to my body.

I have MS, and was dx in October 04 after a massive exaserbation where I basically lost the use of everything from the waist down.

This has mainly returned, albiet from the feeling in my legs, and everyday's a surprise to wake up to.  I now walk slower, can't play the sports I did, and my eyesight varys with the heat.  

For years before this I had weird ailments from vertigo, migraines,tingly bits, my current Dr said I had mental problems, and was imagining the symptoms I had.  So off I went to see a Phychiatrist, convinced I was going a bit nuts.  Lucky for me I wasn't, but looking back I still get very angry at the treatment i received back then.  But I also do realise that MS is a hard condition to diagnose.  I was lucky that my first MRI showed many lesions, varying in sizes, allowing a definate diagnosis.  

But even if some of you do have MS, it's definately not the end of the world.  I returned to work, 3 days a week, have a happy productive life, and can do most things, even if they are a bit slower.  I am on treatment of Betaferon every second day, and it has helped me immensely!  You don't like injecting, but hey you do get used to it.  

Only you know there's something wrong, so persevere!  See different Dr's, and try to get to the bottom of it.  But don't be scared that MS is a death sentence, as it certainly is not.  It's just an inconvienience at times, nothing more.  

Good luck!

Maria
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Avatar_n_tn
I have the same symptoms and results.  I was tested for all the things suggested by this physician (Lyme, all the urine tests...etc).  Nada.  This has only been a month, but I'm still suffering.  I can barely walk some days and my vision is affected.  Strangely though, so is my hearing.  My diagnosis coming out of the hospital after 5 days of steroid treatment is peripheral neuropathy w/possible MS.  My neuroligist did make a good point.  MS sometimes doesn't present itself after the first "episode".  Most of my tests point to MS with the exception of the MRI's.  They did both the brain and neck MRI's with contrast and didn't find anything right now.  They did the muscle tests on my arms and legs (sorry I don't remember all the names of these tests...!)  including the ones with the needles and shocks...UGH...not fun.  Found muscle weakness, but once again, the MRI's are normal.  I can understand your frustrations 100%.  What stinks even worse is the meds they put me on I'm allergic to.  Go figure.  So, basically, to get to the point, I'm still in pain, still fatigued and still in the dark.  If you want to vent your frustrations or just talk, I can relate and am here to visit with.  (***@****)
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Avatar_n_tn
I read with great interest and empathy your story, as I have experienced a very similar case, which began in January of last year.

You can read my full story here:
http://medhelp.org/forums/neuro/messages/33611.html

We both share a common theme:  We've visited countless doctors who have given us countless tests with zero answers, short of "it's all in your head."

To this day, I still periodically endure symptoms that were at their worst a year ago.  Recurring symptoms include a burning sensation on my tongue; tingling around the lower part of my mouth and face; muscle twitching in my arms and legs; tinnitus; and burning/pins-and-needles sensations and pain in my knees, feet, ankles and lower back.

You'll get a lot of people suggesting you look into Lyme Disease.  One thing I'd caution you about is that there is a lot of misinformation being promoted on both sides of the fence regarding this disease.  Don't buy the hype on either side.  If there is strong circumstantial evidence to support Lyme disease, then definitely try the trial of antibiotics (though I think you'll find doctors are reluctant to treat Lyme Disease without serologic "proof").

If you want to email me for more details or share "war stories" about our issue, you can contact me via my hotmail account.  (it's my username @hotmail.com).
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Avatar_n_tn
i have had alot of neuro isses like others, nobody can figure out the cause.  i was given the dx of a stroke, so i'm on blood thinners, i do have a clotting disorder and have had issues with that, the dx made since.  

but now it has been 7 months, my symptoms are ALL only on the LEFT side of my body- weakness in arm/leg, tingling in face and tongue feels really odd (like the back is 2 inches thick at times!!)  the symptoms are minimal one week, then horrible the next..........so i'm really rethinking this 'stroke' diagnosis...

anyone know else can cause neuro issues but ALL ONLY on ONE 1/2 of the body???  i'm hesitant to go back for more testing becuase it didnt seem to help most.  (i had mri and etc about 4 months ago- all looked fine except a small pitutary tumor taht nobody seemed too concerned about)

katy
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Avatar_n_tn
I agree with the above poster.  I don't know why everyone is talking about Lyme disease tests like they are accurate.  They are NOT accurate for the most part (the best labs for testing for Lyme are Igenex and Bowen from my research).  

The standard Lyme disease tests most docs use is called the ELISA test and this test is so unreliable I am wondering why they even use it.

**Lyme disease is a clinical diagnosis**  If your ELISA test comes back negative and your doc says "Well you don't have Lyme disease" don't walk away from this doctor...RUN!
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This is SOOOOO similar to my story...... I will write more when i tell my story and ask for help above, but i would like to keep in touch if possible, in order to share and help.......

please email me at the nickname above @ gmail.com

thanks,

Sue
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Avatar_n_tn
I am touch with the storys that I have read on this forum, so many similar symptoms.  I too have some of these symptoms,  I am not sure when they actually started.  But, now I am so fatigue I can't work.  I worked four years after I had a stoke and my MRI showed white matter disease. I was getting the numbness and tingling, but my legs would hurt and I would lose mobility for a few seconds at a time and I would limp for about three weeks at a time and it would clear up until the next time; this went on for about a year.  My doctor, put me on Naproxen, and that stopped the pain, but sometimes I feel, I will still lose mobility and I still get the numbness and tingling. I ache in the back of my head, back of my neck, and lower back most all the time and I get light-headed and dizzy. My doctor said, my MRI is still showing tia's going to my brain.  The Neurologist said, I do not have MS and my MRI didn't show a stoke and the spots on my brain was caused by migraine headaches and my migraine headaches were psychological.  I don't feel like I wasted my time with the Neurologist, because some of the test he had ordered came back positive. My ANA blood test was positive; I have an autoimmune illness, it could be Lyme disease, or something to do with arthritis. I have an enlarged left thyroid Gland with diffuse low density measuring 3.3x1.6cm; the Neurologist said, it was nothing to worry about.  He wants me to have a spinal tap.  I had a spinal tap at UK, about four years ago and I chose not to have another one. I asked for my records to be sent to my doctor.  I hope that she can explain all of this to me.  Other symptoms is memory loss and my words will get turned around.  And sometimes I can be driving and I don't know where I am at; it hasn't happened much since I quit work and I don't drive by myself much anymore.  Can anyone help me.
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I just read everyone's comments b/c I am trying to find answers just like you. I have severe pain and some numbness in my arms, hands, legs and feet. It feels like I'm burning inside. So far no answers. The first neurologist I saw did tests - EMG Negative, MRI found 2 cyst on brain but he said they are not located in an area that would give me these symptoms. Blood work all Negative.  He basically just wanted to give me pain medicine to take daily and then see me again in 3 months. I thought that was ridicouls - I have appointments next week with another Neurologist and yest I went to see an Orthopedic just to rule out any problems.  He also has no clue.  
I was told I have signs of MS but MRI negative.
I go online all the time looking for answers and see so many related stories and no one has answers it's amazing.  
I was told by my orthopedic to get blood work to check for Neuro Toxins - that is not a normal blood work up so maybe ask your doctor too!
If anyone finds any answers please post them and I will do the same.
I wish everyone luck!!
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Avatar_n_tn
I have had numbness in my big toe on the left foot since 12/06 and really just never gave it much thought until recently when the whole foot went numb and then it started working its way up to the knee. Then I noticed the right toes getting numb only this time the numbness has progressed faster than the left side did.  I also have some slight numbness in the left arm from the hand to the shoulder as well as weakness.  My legs just feel strange and tingly at times but don't hurt.  My doctor ordered a MRI which only showed I have 2 bulging discs and no nerve issues.  She also sent me for ultrasound of kidneys due to recent blood pressure elevations that we can't seem to get under control.  I am having a EMG nerve test done this week.  I am getting really concerned as to what is going on with me.  MS seems to be the big thing I have heard from everyone and some of the symptoms I have seem to fit.  Wouldn't my recent MRI on my spine have showed something MS related though? Anyone  have anything helpful to add?  I have also heard the term Periferal Neuropathy a lot lately but if that is the case, something has to be causing that too. Will the EMG nerve test show that if that is the case?  Thanks,  CHeryl
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For Cheryl - I already had an EMG test which came back neg but that test is suppose to show if there are any nerve problems in your extremedities. I have been looking up so many different things, today I will go for a 2nd opinion at a neurologist b/c my first one just blew it off and wanted me to live on pain med. You're right there is a reason that all this is happening and I think the right doctor will find it. My family doc just told me that if I go to this neuro and he says it's not neuroligical then he wants me to go to a joint spec and then infectiuos disease - to cover all basis.  If yo find anything out let me know and I will do the same. Also my MRI came back neg for MS but I was told sometimes it does the next thing is to get a spinal tap.
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