MS like symptons, no positive diagnosis - what next?

[2kidsmom]

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.

[Alohawen]

Thanks Sharon for sharing your personal experience regarding the lumbar puncture. I am glad to hear that you do not have MS and hope you start feeling better soon. Wendy

[2kidsmom]

Thank you everyone for all of your input.  My hope is that we ALL find answers for each one of our needs.  We all know our own bodies and we all must pursuit answers. This is an incrediable forum that not only provides answers and guidance from the doctor but also from people who are going through almost the very same thing and that in it self is comforting.God Bless.

[sharon123]

I've had a lumbar puncture and even though it wasn't pleasant, it was worth finding out the results. NO MS! I've worried for a year about MS and my MRI was negative but I still had MS-like symptoms and the neuro dr. that did my spinal tap said it would show with 98% certainty whether I had MS or not. With a clean MRI and a negative spinal tap I've been able to let go of that worry and even though I don't have a diagnosis, it's at least not that. The spinal tap itself is not really painful, it's the headache afterwards. Good luck to you.

[Alohawen]

I'm sorry to hear that so many people are suffering with such debilitating symptoms without diagnosis.  I share similar symptomatology including needle-like sensations and tingling in my hands, legs and feet, decreased memory capabilities, twitching muscles, among other symptoms.  My MRI test revealed two spots that could be MS lesions although I do not have a definitive diagnosis.  A somatosensory evoked potential test revealed a delayed response from the left tibial region.  I suffered with progressively worsening symptoms for two and one half years. The good news is that my symptoms are 90% better. The symptoms nearly disappeared after I had a miscarriage and then began taking 1300 mg of oil of evening primrose twice daily, folic acid supplements, a daily vitamin and cod liver oil. I believe the improvement is hormone related.  Please check with your doctor,however, before contemplating alternative medicines as I am sure there are side effects.  I just decided that for me it was worth the risk. However, I have now been told that I have a 2 cm long fibroid (which could be resultant from the evening primrose altering the hormonal levels), so I have cut my intake to 1300mg daily.  My doctor recommended I obtain a lumbar puncture, but I am nervous about the procedure and possible errors. If anyone has been through it, I would appreciate your input. Thanks.
Wendy

[mikesgirl]

Oh my gosh!  Don't even get me started on neurontin...  When Mike was first admitted to the hospital back in February, neurontin was one of the meds he was on.  His jerks were severe enough to almost throw him out of bed, and although the neurontin *did* stop it, it stopped darn near everything else, too.  At this point, I'm convinced that half his disability is due to the fact that he was so heavily drugged for so long, he just couldn't recover as quickly as he would have on his own.  Some of the effects that caused us to discontinue neurontin were: double-vision, severe orthostatic hypotension, constantly low blood pressure, more severe vertigo, hypersomnolence, and probably other things that Mike couldn't even articulate.  As I recall, it seems that was when he was very disoriented, as well.  One of the biggest problems with so many drugs, as I remember, was figuring out which ones were causing which effects, and then deciphering which symptoms were actually the illness.  It still infuriates me that many of the side-effects were considered by doctors to be part of the illness itself, when, in fact, they were not.  Even at this point, I don't know what is drug-related.  He is only taking trileptal, and that seems to be okay, but we really don't know that.  Recently, Depakote was tried, and his shaking became worse.  Had I not been fully aware of the likelihood of the Depakote was causing it, I would have been fooled and assumed Mike was just having a downturn and been very discouraged.  We are rapidly becoming almost totally anti-drug as a result of all of this.  Mike would just as soon give up all the drugs and just live with his problem at this point, rather than give yet another drug an opportunity to mess him up further.  When there's no clear diagnosis, it just makes no sense whatsoever to pump this stuff into your system, or so we're beginning to feel.  More drugs just confuse the issue, in our experience, and make diagnosis even more difficult for the doctors.  <climbing down off my irate soapbox now...>  If it turns out that a vestibular problem is the primary issue here, then he has lost eight months of potential rehabilitation, which is crucial in vestibular problems.

[mea]

Is Mike take neurontin?  I've read a lot of your postings but not sure if I've seen that or if someone else.  If so, our experience with this drug, might help you out!!

My husband began taking neurontin at the beginning of his illness (4/01) and at the beginning the dosage was 300mg qid and after two weeks he was supposed to increase to 600mg qid.  On the 2nd-3rd day of the increased dosing, he began having the worst muscle jerks, especially in his neck but still was all over...it reminded me of tourette's (sp). It was awful.  I immediately stopped that dosage and he went back to the 300 mg qid and called his doctor.  Neuro had no problem with him remaining at the lower dosage and the horrible jerking stopped within a couple of days.  He continued taking neurontin at the lower dose until this past July when he was admitted for renal failure (another problem mostly due to medication, we think).  They reexamined all of his medicines and neurontin was removed totally.  Part of his problem has been short-term memory loss, which was severe at the onset (nothing to do with medication but with this disease, whatever it "really" is), and over the last 18 months his memory has improved.  However, I have noticed a tremendous difference in his memory and interaction since removing neurontin altogether.  We still have a long way to go...but mentally he is much improved and I know it's because of the neurontin.  It's a good drug, but it has some "mean" side effects.  I wish you the best...(I kinda know what you're going thru as a caregiver) mea