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.

[mom in law]

All,

please look into "Olivio Ponto Cerebellum".  My son-in-law was recently diagnosed with this.  Had all the symptoms of MS - early diagnosis was a gluten allergy, tried the diet for months with no change.  Finally found a doctor that diagnosed him with the above.  

There is a website .. couldn't hurt to mention it to your doctor and check out the website.  Good luck to all of you.

[Honeybear's mom]

Hi everyone!  Since many of you have been experiencing symptoms that may be associated with MS, I thought I'd ask your opinions.  I'm 28, and have had strange neuro symptoms for over 2 years.  Mostly just a pulsing, buzzing-like, current-like sensation just under the skin, not really tingling or numbness (hard to explain!)  They come in waves and last for several hours, then go away, then come back off and on for several days.  They're in one area for several weeks, then I'll feel it in a different area (e.g. left shin, right tip of index finger; very specific areas).  I also tend to feel intermittent tiredness in one leg or the other.  It has never kept me from exercising - in fact, I don't really notice it when I'm exercising.  I've had 3 MRI's of the brain (normal), an EMG (normal), BAER (normal), VER (normal), bloodwork (normal), normal neuro exam, and a slowed somatosensory evoked potential (they chalked it up to minor scoliosis).  I've had 3 neurologists tell me it's not likely to be MS, but what else could it be?  I've looked into Vit. B deficiency, but take tons of B-complex vitamins.  I've had neurologists tell me to not worry about getting a spinal tap, because they don't see a reason for it.  I don't want to be paranoid, but it's really freaking me out!  And it's just gone on for so long, that I'd really like some opinions on what to do next (if anything).  I'll try to post a general question to the forum this week.  Thanks for any advice/comments you have!
HM

[chiliperson]

I have a friend with who has had many of the same symptoms without diagnosis - she finally was diagnosed with central nervous system vasculitis - a very rare condition and many doctors are not familiar with diagnosing or treating it - she is doing much better now - you can check out by just entering Central Nervous System Vasculitis on the internet to see a website - symptoms, treatment etc.

[2kidsmom]

see above comment...sorry

[2kidsmom]

Toro,
Hi....to answer your question I never did find out what these twinkling things are.  I have had just about every test (neurological).  With all of my other problems for some reason that just doesn't sit high at the top of the list.  I too am supposed to schedule a lumbar puncture...I will probably schedule before the holidays....I hope you find yourself in good health as for so many of us are too young to be this sick.
With Best Regards

[toro]

did you ever find out what the twinkling stars/vision problems were?
the reason i ask is because i ve been having the sme type vioson problems similar to that, for the past year and a half, and have yet to find out any solution.
along with many other symtoms (dizziness,headaches,numbness of arms while sleeping,ect.)
ive been to m.d,optometrists,ophthalmologists,neuro-ophthalmologists,neurologists ,e.r's and have had blood tests, c/t scans,mri of the head,thyroid tests,all normal. and still everybody seems to be dumbfounded about what it could be.
our next avenue is to do the lumbar puncture .
anyway 2kidsmom i saw the posting you did a while back and you had described the same type of vision problem im having and was wondering if you had found out what it is.
        thanks
                toro