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MS like symptons, no positive diagnosis - what next?

See your prev answer to me(Aug)"what should i do now?"...  HISTORY: Scale(1-best 10-worst)CONSTANT:dizziness(10),light headedness(10),weakness in limbs(9),fatigue(7),incoordination(9)(e.g. feel like going to fall),short term memory(6),inability to focus(7), ringing ears(9).SOMETIMES:numbness in left arm(5),tingling (pins/needles) in limbs(5). Symptoms have been increasing over time(years)-coming ang going,now mostly constant and seem to increase after being in heat (e.g. shower, etc). TESTS: MRI(normal),EMG(normal),BAER/Visual(VER)(normal),bloodwork(normal). DIAGNOSIS:Rhumatol.. ruled out Chronic fatigue, fybromalgia,Lymes,etc. Neurologist wants a Spinal Tap next. Plan to get 2nd opinion in Jan from U of Penn (no insur 'til then) NOW WHAT? What else (other than MS) could it be?The only thing not ruled out is MS, despite normal testing.  I've read, even the spinal could be normal & still be MS.  If so(normal spinal), what should i do next?  Doctors seem stumped.  Can they treat me for MS without postive diagnosis and see if I respond?  They are not giving me/doing anything to make me feel better.  No diagnosis either.  If normal spinal tap - what next? I cannot care for my 2 small children w/o assistant from family-Thank You for taking the time to help others that are going through difficult times...your words and knowledge are comforting.
53 Responses
Avatar universal
Unlikely treatment for MS will be initiated if everything comes back stone cold normal, unless there is a very strong clinical suspicion that you really do have MS. 10% patients with actual MS do have a normal MRI on presentation. However, this needs to be taken into clinical context, depending on the history and exam. With normal results from the extensive testing, it should be somewhat reassuring that nothing requiring emergent treatment is going on.  Hard to say what it could be as I have not personally examined you and everything has been normal thus far.  U Penn has an excellent neurology program and it would be good for someone to take a fresh look at you. In the meantime, you should try symptomatic treatment which of course isn't getting to the root fo the problem, but it should help you function until you do. Neurontin or elavil may help with the tingling. Physical therapy or exercise such as swimming may also be of help. Balanced diet with multivitamin and rest should also be part of the regimen. GOod luck.
Avatar universal
I have one additional comment/question-sorry
If this is indeed MS I feel as though this would be the more progressive stage where my symptoms are staying rather than the remitting stage....Could it be possible to be in the progressive stage without evidence of the disease-basically what I am asking is can a person become progressive in a short term (1 year)?  Sorry for taking up so much of your time. With Best Regards
Avatar universal
2 kidsmom  this is identical to what I am experienceing to the T I also have had all these tests with all normal results am still also still searching I thought I was going crazy have they told you any thing that it could be? The only oter symptons that I have are ears feel like I am in the mountians and they won't open and now my head is kind of shaky at times. Well I will keep you informed on any thing I find but all your symptons and how you put them on a scale fit perfect with mine.
Avatar universal
I have very similar symptoms however I have not had an MRI or BAER etc. I finally was able to get a Dr to beleive that I was sick and drew Coxsackie and EBV labs. They both came back positive and very high titers 3 different times now. The neurological symptoms have been getting progressivly worse, very bad coordination, brain fog, pass out and was admitted to CCU, very hypertensive intermittently. One thing they might want to rule out is Pheochromocytoma. I am waiting for the test for Pheo to come back. Then it is on to more doctors and hopefully I will find one that is knowledgable in treating and ruling out some other bad, bad things tese viruses can be or lead to. Any suggestions, Im open. This has been going on for approximently a year.
Avatar universal
i had a friend send me an email,one of those pass it on ones.it was from a lady who had a lot of the same symptoms and test you guys are talking about.the docs didn't know what was wrong with her. her health slowly deteriorated.she tried on last thing. she gave up all produdicts with aspertaime.and with in a couple of weeks she was pretty much back to normal health.
my sister over the last yr has been to docs and been tested for things from ms to lupas.i emailed the artical to my brother in law. he gave it to her,she used to drink 4-5 diet cokes a day.with in a week of giving those up she was feeling 80% better now she feels like she is a whole different person.i don't have the artical anymore but sure i can find it if you are interested email me at  ***@**** . sorry for all this missspelled words  and grammer misstakes not my strong suit know what i mean lol
Avatar universal
Jazon, Tlaw and brunobandit-
Thank you for responding.  Jazov and Tlaw-I am very sorry that you too suffer from similar symptoms.  I have been to so many doctors that do not know what to do for me that I too doubted myself. Because I live everyday feeling the way that I do I know that there is something wrong. I do not know where you guys are as far as physically but everyday is a stuggle for me to even bath or walk up steps or take care of my home.  I very rarly leave home.  Since you both seem to have similar symptoms I would be interested in hearing how you cope.
Brunobandit-Thank you for your comment as well.  I am on a very strick diet....I rarly eat anything with sugar let alone aspertame.  There is alot of information out there about that subject and I am always interested in hearing the latest
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