hi all, I am glad to find this "new" forum again .. (I did not post much to the previous "original" BrainTalk forum because of my "not sufficient" English - but I liked being there even when only browsing around and reading ... so it is nice it is back again ...

there is a few new things about me .. as I have just posted in "General Health ..." forum (sorry to bother you here again, but I have no idea of where I belong to .. ) ..

I have had many MS symptoms for a couple of years, getting worse, but no attacks (fatigue, muscle weakness, tingling, pareshesias, L´hermite, dizziness, poor balance, constantly moving/wawing/oscillating vision + some "non-MS" symptoms (as my docs say) - swolen lymph nodes, myoclonus/muscle jerks, tinnitus, constant "burning" feeling in my muscles/on my skin (??) (in hands, around stomach, neck) ..etc.
I have been treated as a hypochondriac for about 9 years - trying to explain, that I really cant help walking like drunk, not being able to hold a pencil after a while etc. - the docs kept telling me all my symptoms are only "psychological" ..

this summer I finally found a new neurologist, who sent me to the hospital - so I finally went through MRI (brain, cervical spine), EP, Lumbal Puncture etc .. but - the results did not prove MS - as my doctors said -

I "only" have elevated levels of IgG antibodies / 4 oligoclonal bands in CSFluid .. + my blood tests showed some autoimune problem ..

besides this, the only evidence, that the docs can see, is that I am off-ballance and that I have no reflexes on the left side of "abdomen area" (I do not know the proper name of the reflex, that should be present when skratching with e.g. pencil on the "around stomach" skin)

everything else (MRI, EP ..) is clear ..

I know that diagnosing process is not easy, especially with MS - but what I am hopeless about is that neurologists say "you have not neurological problem" - but - all other doctors keep sending me back to neurologists again saying "your symptoms are neurological" ..

well - last week my GP sent me to hemato-oncologist to rule out "myeloma" or "lymphoma" or whatever like that .. but the oncologist also told me, that my symptoms are typical for MS - and - as he said - even if the results would prove the lymphoma or whatever - this would not explain my neurological symptomatology ...
SO - I am lost again ..

so - please - has anyone any suggestions / experience ??
thank you, a.

Welcome Alena.

Sorry to hear you are on the dx merry-go-round for so long.

With four "O" bands and a strong history of neuro signs . . . MS could be a possibility. Many of the symptoms you have listed do seem to indicate some spinal cord damage . . . however, it is a little surprising that they haven't found any lesions after this length of time.

Have you had clear attacks with remission (not necessarily COMPLETE remission)? Were you in an "attack" when they did the testing?

Cherie

Welcome Home, Alena. Glad you found us.

I am so sorry for your seemingly lact of validation and/or DX. It sure seems to me that the MS DX process is harder than it used to be. Are your Docs, at least, giving you any meds for your symptoms?

Have you seen an MS specialist? Have you had an MRI with enhancement? Have you had an MRI of the brain and the spine? It's not unusual for MS to be present with no lesions showing.

Let us know how it goes for you and, in the meantime, we are here to listen and to help you deal with it. Take care.

Hugs,

Welcome back, Alena-

Sorry you're on the limbo track----have your docs tested for lupus? My sister has lupus and has many of your symptoms---including very sore joints, as she also has osteoarthritis. The damned autoimmune diseases seem to run in families. Any of your relatives have autoimmune diseases?

Rheumatologists here usually treat lupus. How about there?

Take care, and keep your spirits up. Demand antidepressants if you need them! I certainly was depressed going through my 2 year diagnosis procedure!

If you go to the National MS Society's site...their Sourcebook includes informatioin about MRI's too...it says 5% of the people have NO lesions. Sorry, but my links are on the first forum...

Hang in there! One thing I've learned about MS is it's slightly different for everyone and VERY unpredictable.

Take care.

Hi Alena

Other than the swollen lymph nodes, and maybe the tinnitus, those could be MS symptoms. Have you been tested for Lyme Disease? Or Hughes Syndrome?

Hope you find some answers soon.

Scott

Hi Alena,
have you ever been tested for lyme disease. I was in limbo land for a while and was tested for lyme but negative. Lyme mimicks MS and some of the non-MS related symptoms that you mentioned are direct symptoms of lyme. Lyme is hard to diagnose but there is a newer test by Ignex that I understand is accurate. You may want to see a LLMD (lyme literate medical doctor) I wish you the best. If it is MS I hope that it show soon, limbo land is no fun when symptoms tend to worsen over time. My tests were continuously negative but when they did finally show up on tests

Soulflower

Hi alena,

You'll find many people who have had to wait and wait (sometimes many years) before MS was diagnosed. Some have even been diagnosed with MS and later had the diagnosis changed. I don't want to alarm you, and I hope that your waiting experience won't last much longer.

The four oligoclonal bands found in your CSF should be significant, and you might want to remind any doctor you see about them. Sometimes doctors don't remember all of the details of a patient's medical history. They may have glanced over the sheaf of papers in your chart but missed something important.

Absent abdominal reflexes may not be so significant, however.

I'm sorry I can't be more helpful, but I don't have any medical training.

Na shledanou! (I know a few words of Czech.)

hi all,
thank you all for your responses and taking care ..
and, 0357, thank you for the "MS Society's site" reference .. great site ..
thank you all, I appreciate every single idea ..

my docs now tell me "almost everything is clear, and you look quite good", so just wait and live "your normal life" ... but - I walk like drunk, which I do not like at all; my monitor (walls in the room, trees in the street, whatever) is "sliding/dancing/wawing in all directions in front of my eyes ... and as an illustrator /photo-retouch editor (etc.) I need my right hand to draw, need my eyes to see colors .. which I sometimes simply cant "use" .. so my life does not look like normal any more, and I have no idea what is wrong ..

I know many people have to deal with much more serious problems ..
I am just trying to find - somehow - something more than "just wait" .. that is why I am here ..

your questions: I have never had any attack, my tests for lyme were negative (but positive for mononucleosis); MS specialist is not available for me (here) until I am diagnosed with MS; my MRI were made without the enhancement (brain, cervical spine); I have never considered lupus - I will try to find some more information..

thank you,
take care
a.

p.s.
agate, ahoj it is nice to see Czech here