blurry,dizzy, pain in arm,pins & needles but clean MRI

[JoeHolmdel]

I am a 42 yr old male.  For 7 months I have been suffering from dizziness, blurriness, nauseous, pins and needles in my hands and feet, pain in my right arm, burning sensations throughout my body, fatigue and initially experienced a weakness on my right side.  My symptoms seem to me to be classic Multiple Sclerosis.  However all of my tests have been negative.  I have had MRI's of Brain & Spine, Visual Evoked Potential, SER, BAER, and all shorts of test to rule out my middle ear.  My DR's haven't been willing to treat me for MS because so far they do not see any lesions.  However They also do not offer any other possible explanation for my problems.  My condition seems to have gotten worse over the last 7 months and I feel like the DRs are waiting for a bigger attack before they treat me.  Am I alone out there?  Does anyone have any suggestions for me?  

[T-lynn]

Joe,

You definatly have had a comprehensiv e work-up with test.One I don't see is a lumbar puncture.The spinal fluid can rule out many disorders including lyme.

Your testing went like mine.I had a 2 year ordeal and one test found brain stem lesions,plus the LP was abnormal.I was dx'd in December of 06 at the age of 40.

I have been left with permanant leg damage.

Hang in there,the answers will come.Try to stay active,keep your muscles stretched,eat good and keep a positive mind.Staying positive is most of the battle.

Keep a journal of your symptoms what makes them worse and so forth.
Get copies of all your medical records and reports of all test!!!

I can't stress that enough,get your reports, read them.Get a second or third opinion if need be.But get copies of all your test results so you personally have your own file on your health.

[JoeHolmdel]

I am scheduled for the Lumbar punture next week.  I also had the Lymes test including the one they do at IgeneX and it was negative.  I appreciate your comments.  Was your LP abnormal intitialy or were all your tests negative for 2 years and then finally some of your tests were abnormal?

[T-lynn]

My Lp was abnormal from the get go.No O-bands but IgG synthesis,and myelin basic proteins were extremly high.
Brain mri was abnormal also it showed cortical atrophy consistant with demyeylination as seen in MS.Didn't know that until I received the report, neuro stated it was normal.My brain shrinking is not normal.That neuro got kicked to the curb.
A ENG/VNG a hearing evoked potential detected the brain stem and left hemisphere lesions.Not eveything shows up on MRI's .many mri machines are out dated.Larger facilities are using T3's they show more,plus alot depends on slice mm's.

I had abnormal test ,but the testing took forever to get done,plus I had previous back surgeries and had to go through extensive test to make sure that wasn't causing the numbness and spasms in the legs.

The thing with MS is that theres not just one single test that says you have MS.Its a combination of test,abnormalities ,symptoms.5% of people with MS may never show lesions.

[JoeHolmdel]

I hope the best for you.  In the meantime I am suffering from symptoms with no diagnosis.  Very frustrating.

[tory2457]

Hi Joe,

Sorry you are feeling bad and still don't have a diagnosis. Don't forget, MS is a clinical diagnosis; personally it took 3 yrs for my diagnosis.

With that said, Lyme disease is also a clinical diagnosis...20+ years later, I am now treating my MS with antibiotics,,,,,because of my "symptoms" and my negative IgeneX test, my new doc says you have lyme disease... !

yes, I had a negative IgeneX test too, but I did have positive bands that were both positive and IND, so along with my symptoms, lesions on both my brain and spinal cord, I was clinically diagnosed with lyme disease.

Can you post what your test results were? The CDC criteria never included two very lyme specfic bands back into their mix (band 31 & 34 ) this makes the sickest of us to NOT have a positive test result. Very frustrating!

Your symptoms sound like lyme could be very possible.

the best to you,
tory

[Quixotic1]

Hi, Welcome to the forum.  I'm so sorry you are suffering from such severe symptoms and haven't found a diagnosis.  Lynn and Tory have given some very good advice.  I am not a neurologist, but I am a retired MD and I am newly diagnosed with MS.  I also have chronic vertigo.

I'm going to try to expand what we know about your illness a little and maybe we can come with some new ideas.  I agree that your group of symptoms sounds like MS, but also could be Lyme and some other things, depending...  Would you be willing to answer a few questions about it?

Would you describe how your symptoms started?  What came first?  Did all the different symptoms appear at once?

Did you have any big physical stressors within the couple months just prior to the beginning of it all?  Any infections or vaccinations?

What are your reflexes like, especially at your knees and ankles?  Hyper or decreased?

Were all your MRI's done with contrast?  C-spine and t-spine?  Call the Imaging Center where you had them done and ask if the machine was a newer  T3  (3 Tesla magnet) or the more common, older machines whcih have a 1.5 Tesla magnet.  The 3T are better at picking up MS lesions.

Have you had any Nerve Conduction tests  (NCS) for the areas that are persistently numb, tingly or weak?

These are my initial thoughts.  Yes, you definitely need a spinal tap.  These are not that bad.  The fluid should be sent for all the usual things, plus a full MS protocol, which includes IgG Index, general protein, presence of Myelin Basic Protein, and for Oligoclonal bands, and also to Igenex for Lyme studies.

Tory is right.  99% of doctors do not request the right studies when they work up Lyme disease.  

Lynn is also right on with the recommendation to get all of your lab reports, readouts of all your tests, plus real copies of all MRI's.  (My neuro doesn't trust ANYONE's readings except his own, even neuroradiologists.  And he has seen things they missed on more than one occasion!)

Nerve Conduction Studies might be helpful in seeing where the damage is to the nerves, and in what kind of damage they have suffered.

If your tendon reflexes are absent are markedly decreased your doctors should consider another diagnosis of CIDP - Chronic Imflammatory Demyelinating Polyradiculopathy.  This is an autoimmune illness that can look like MS and Lyme in many ways, but the damage to the nerves is peripheral.  In MS it is central in the CNS -Central Nervous System (Brain and spine)  In CIDP the best information comes from the Nerve Studies.  This is much rarer than MS, but it does pop up.

Another avenue that you could pursue which might give a clue would be to see a vertigo specialist, called a Neuro-otologist.  There is a test called an ENG (Electro-NystagmoGram) which often can distinguish between dizziness from the inner ear and dizziness from the brainstem (as in MS).

I went 2 and 1/2 years without a diagnosis even though I was losing function.  My "evil" neuro thought I was a crock and didn't give me much thought.  He called my first two MRI's "normal", but they weren't (I found out later).  Finally, when I got all my info together, and into a timeline of symptoms, Dr. visits, tests and results, then went to an MS Specialist - I got my diagnosis quite quickly.  My spinal tap showed enough postives, so that combined with my physical exam, and the one lonesome lesion on my brain, he could call the diagnosis.

So one MRI is not the be all of an MS diagnosis.  The other thing that has to be done to make a diagnosis of MS when the MRI doesn't show enough is that all the other possibilites for white matter disease must be ruled out.  This is a list of about 10 blood tests.  I could give it to you if you want.

A lot of what we try to do here is to help guide people toward a more appropriate work up when they come here with symptoms that are suggestive of MS.  The we support them while it gets done.

Are you comfortable with your neurologist?  Is he taking you seriously, but is just stumped?  Or has he made insinuations that you're not quite right in the head?  If you're not confident that he is being aggressive in looking for your problem, we all recommend looking for new blood!

Well, I do go on and on.  I hope this helps.  Stay around and keep asking questions.

Quix

[tory2457]

Hi Quix,

I need to say that I find your input invaluable. I only read a few of your posts, but did notice how many there are!

I can't imagine how scared and confused so many folks are when their health is an issue.

Personally, I guess I was lucky to have found good doctors to help me get well.

I appreciate your view on getting the correct testing to rule Lyme Disease in or out. Coming from a doctor is so important!  Thanks.

My current doctor is all about educating the medical community on this dreadful disease...and having you well versed is appreciated.

If I may ask, have you ever been tested for Lyme through a Lab like IgeneX? I can't not ask this question because you and I share the same diagnosis...MS.
and, if you have been tested, would you post the bands that were positive or IND?

I tested negative (lots do) because of how long I've had MS; yet I have specific bands that were positive.

thanks in advance,
tory

[JoeHolmdel]

Thank you for your thoughts.  I have had 3 Lymes tests(including IgeneX) and all negative.  Despite that a Dr wanted to treat me for Lymes and the treatments didnt help.  The symptoms started about 7 months ago.  I did go to a a ENT Dr and he initially daignoseed me with a sinus infection.  My symptoms at that time were blurred vision, dizzyness, pins and needles in hands and feet as well as a weakness on the right side of my body.  He sent me for an Auditory Brainstem Response evaluation and they did all the middle ear tests.  My other tests was EEG, MRI of Brain and Spine with contrast (T2), MRA, and visual evoked potential.  All tests were negative.  My symptoms continue to be bluured vision, dizzyness pins and needles, pain in my right arm, stiff neck, burning sensations on my skin, and strange temperature changes.  I have repeated almost all my tests and in addition added a BAER, and SER.  I am scheduled for my lumbar puncture on Tuesday.  At this point the only thing the Dr's are able to see is a fine nystagmus conjugate on left gaze and a few moderate beats of nystagmus in the righht lateral rectus on right gaze.  The only time I had some unexpainable symptoms was 3 years ago where I had a 14 hr episode of right arm, leg and right trunk numbness.  As far as reflexes, they were +1 and symetrical in the upper and lower extremities and 2+ at the Achilles bilaterally.  I did go see a Neuro Otologist as well and he has not provided me with a diagnosis.  I am very comfortable with my MS Dr.  He is the head of Mt Sinai MS division.  He is taking me seriously but has recently sent me to a phyciatrist.  I have been quite anxious and he thought she could help.  What is frustrating, especially as I am a very Black and White person, is how can I have all these symptoms with no diagnosis.  Secondly if my LP is negative, should I rule out MS or can the proof of MS (lesions, failed VEP etc) posibly come at a later time.  Is there such a thing as pre MS?  Or should it be reasonable to assume considering all my sympoms, that some of my tests should show positive.  I dont know what to think anymore.  My quality of life is incredibly low and noo one has answers.  Thanks for your thoughts

[JoeHolmdel]

sorry for grammer and spelling mistakes.  I didnt check before I sent it

[oncetri]

I'm sorry to hear about everything you are suffering from.  I now what you mean about the anxiety about quality of life.  I used to be a triathlete and now I need to go out with mom everywhere and cannot take care of my son without her help.  Not exactly what I expected as a new mom.

I just had a question about vision.  I keep reading about vision problems, and this is the only symptom I seem to not have, but I have had vision problems since I can remember.  My prescription is pretty bad (-7.5 and -7) and my eyes both have astigmatisms.  I've been disqualified from Lasik and pretty much any other corrective eye surgery because of this.  I have double vision at night, but I was told this was due to the astigmatisms and mild night blindness.  Could these be considered symptoms that have gone unnoticed?  I always wear my contacts so my eye doctor is the only one who has seen my eyes without corrective lenses.  I also lose vision nearly completely if I go into a room without different lighting and sometimes if I get up too fast.  Should I be going back to the eye doctor and have him re-evaluate the double vision at night and mention the vision loss even though it only lasts a few seconds and doesn't occur that often?

[Want to feel well!!!]

Hi...I'm glad you came here MedicGirl...

To all in the forum, MedicGirl made a post to that long thread over in "Doctor to Patient" and I asked her to repost here.  I figured everyone would read her post here faster.

I have little to offer her, but I know you guys will jump in!

[MedicGirl]

Hi, I am new here. I was told several day's ago that I prob. had MS. Several years ago I started having RLS symptoms and difficulty handling heat. My feet are alway's cold and even turn blue. ( I was tested for blood clots, etc.-all negative) Then last week I was trying to paint my nails, and my vision was blurry, and double. ( I have worn glasses/contacts for many years-I cannot see clearly with glasses at all.) I went to the eye Dr. and she said my distance vision was o.k. and that my near vision was off by quite a bit. I had just goten new glasses four months ago. She sent me to the E.R. for a ct scan/blood work. My ct scan was o.k., but my L.P. showed very high protein levels. My balance is off, I still cannot see clearly, cold hands/feet, forgetfull, tingling arms/legs, RLS, and double vision. The E.R. doc tested me for many things-I was there for ten hours waiting on the results. He called a neuro doc. and they both think it's M.S. I see the neuro next week.
      I have been a medic for over ten years. Theese symptoms are a drastic change of life for me. I cannot work until this is resolved. My captian ( and myself) are worried I'll make a mistake treating a patient. I cannot see well enough to start IV's or read the drug bottles. The neuro doc said that this will change my life forever and that will prob have to change job's if they can slow the symptoms down. The vision symptoms are getting worse. Can anyone offer any advice? I know what MS is medically, but I do not know what it is as a patient. I don't know if this has even hit me fully.

[oncetri]

You might even want to make another post in here, titled directly for a question about your vision

[MedicGirl]

I forgot to "title" my previous post above.

[Want to feel well!!!]

I wouldn't matter if the title was the same.  Everyone would see it as a new posting.

[Want to feel well!!!]

I missread your answer...but anyway you can start a new post...

[tory2457]

Joe,

Geez, try to keep your chin up, you will find an answer.

I can only repeat that no testing can completetly give you all the answers. MS is a clinical diagnosis! based on your symptoms,,,then the test results.
MRI's can't "see" everything, and LP's well I will not even comment.

You mentioned being tested 3 X's for lyme,,, lots of folks are and do test negative. This is not un-common.

You also mentioned being tested by IgeneX Labs. Were any bands positive? or IND? This is where the confusion can be. If the overall test was negative,,,,a doctor not educated in lyme disease will say NO LYME!

But, if only 1 band is positive or IND, and based on your symptoms a lyme doctor would suggest an emperical treatment of antibiotics!

Your symptoms sure do sound like MS and Lyme,,,,,
as for  the recent suggestion of a psychiatrist ---this is just another suggestion so many with Lyme that were misdiagnosed were given! A shrink because no docs can find what is wrong!

We don't need a shrink, we need standardized testing for this very harmful bacteria!

[Quixotic1]

Hi, Joe, thanks for answering my questions.  If I calculate right, today is your spinal tap.  Good Luck, you'll probably see this tomorrow.  Your reflexes are generally decreased, so I think your neuro (I'm glad he seems good, interested and competent) might consider CIDP.  Did you have any infections or vaccinations prior to your symptoms?

You asked if a normal MRI and negative LP can effectively rule out MS.  Most neurologists will tell you yes, but we certainly have people here who say other wise.  I'm sorry, but you're having the wrong types of symptoms to be have a personality who prefers things to be black & white  or yes&no.  This is a field of endless shades of gray and sometimes long periods of uncertainty.  So you will have to be another personality type, I guess, lol.

I haven't seen you mention Nerve Conduction studies.  I would recommend that you also have those.  And, again the consult with a neuro-otologist.

I have no problems with a psychiatrist helping work through whether anxiety is disabling and needs treating or whether it is appropriate given your symptoms and decreased function.  She can help by reporting back to your primary docs the need to continue looking for the cause of the neurological problems.

I would also recommend that you make a journal/timeline of when all the symptoms appeared, what they were like, how long they lasted.  Add in the dates of all Dr. visits and what was said, all tests, and what the results were.  Get copies of EVERYTHING and place in a notebook.  Once you are on the path of continues symptoms and persistently negative testing this timeline becomes incredibly important.

Keep posting questions, new symptoms, thoughts.  You are in the situation that I hope this forum can be useful for.  Quix

[oneontamom]

Hi. I am 32 year old mom of two. I have been in the hospital twice this past month for numbness on right side of body and for what I thought was heart symptoms. those hospital visits were during a three week period where I was experienceing shooting pains in my hands and feet, face numbness, body aches, trouble usuing my left hand...kept dropping things, constipation and memory problems and muscle spasms in my left arm and leg. I was also exhausted. mysteriously they started getting better around three weeks. I feel better now...almost normal expet for headaches and fatigue. I have had this happen to me a few times over the past three years but never like this. I have also suddenly been unable to be in any kind of heat...I start to get sick.  I went to a two primary care physicians who said my bloodwork was fine and I may have to deal with the symptoms, one thinks it is stress. I am seeing a neurologist but he was very pushy and did not really do a thorough physical exaamination. I am so frustrated and appreciate any help. I did get an mri because I asked for one and the regular doctor said it was fine...have not heard from neurologist. I know I am not crazy and I can't just live with symptoms like this. I mean...if your face is numb and your right side is pins and needles and you are having a muscle spasm its a little hard to act "normal"....thank you so much for your help... heather

[oncetri]

Hang in there.  I know hwo difficult it can be to get a doctor to take you seriously.  If you feel you aren't getting the help you need.  Just keep pursuing different doctors until you feel that you are being taken seriously.  I had to go through three ob/gyns to have them take me seriously, since my symptoms appeared after my pregnancy.  Fortunately, my chiropractor gave me a referral to a neurologist and I don't need referrals for my insurance.

Keep on searching.  Good luck

[sunsetfl]

Hello,
     You are not alone. Ten months ago I had sudden severe stabbing pains in my feet and could not walk for five days. The next month, while at work, I fell going up stairs because my legs gave out. The next month, I lost feeling in my left hand, tingling, burning and pain in all my limbs. From there the muscle weakness continued to get worse and I have had no relief from the pain, tingling and burning. At times, I can not walk at all. That doesn't include the headaches, dizzy spells, incontinence, and nausea. I have spent the last eight months going from doctor to doctor because the first three told me I was stressed out. I, like you, continue to get worse with no clear diagnosis yet, even though the nurse called and told me it was MS, the doctor changed his mind. Anyway, keep trying and don't take no for an answer from these doctors. If you have to, move on to another doctor. I had to go out of state to find a doctor that would help. Like you, my last doctor told me to go home and wait for another symptom or attack. I asked him what could be worse, I can't walk anymore and I can't feel my left hand and arm. My doctor had no answer, he just shrugged. I also worry about permanent damage considering 10 months ago I was very active and had a great career. Now, I am stuck in my house. Good luck with your LP and let us know what you find out. My LP was the test that finally showed a serious problem.

[sunsetfl]

Sorry, didn't realize this was an old post. New here and getting use to everything.