Ms, or is it Lyme, or what? Desperate

[jsanzmadrid]

Hi! I have a question for those of you who know about MS and Lyme. My sister (22) was dx with ms 8 years ago, after an episode of optic neuritis. She has been doing great since, with only another double-vision problem that resolved quickly. Her last brain mri (4 month ago) shows only one lesion, while his spine mri is clear.

From August 07, she has been experiencing extreme heaviness in her arms and hands. The symptoms come and go even within minutes, with a tendency to be worse upon awakening. She has always been a very active person, but these symptoms are so debilitating that she no longer carries a normal life, this is driving her crazy. We have seen the best neurologists here in Spain (we both live there). They have run all the ms tests and said these symptoms are no ms-related. It is a somatic problem for them. She is now on antidepressants with no results at all.

We wonder if this could be Lyme and not ms. She recalls a strange rash (not bull's eye shaped) in her forehead when dx with ms 8 years ago. ELISA test for Lyme came back negative then, but we know how unreliable these are.

Do you have any idea/suggestion about this? Anything y appreciated. Thanks

[Heather3418]

I agree with Rebeccah...I would have the Lyme test repeated.  It's called the Western Blot Test.  I was bitten by a known Lyme disease carrying tick with the typical bulls'- eye circle, but caught it BEFORE the rash.  Went to the doctor the next day after the bite, with tick in hand and immediately placed on antibiotics.  The tick was tssted by the United States Center for Disease Control (CDC) and the tick was found to be a carrier of the Lyme disease.

I have been retested for Lyme disease using the Western Blot test.  Even though the test has come back negative twice, my Neurologist here in the States feels that it wouldn't hurt to have a follow-up test.

I have been diagnosed with MS for 13 years and my tick bite was a few years ago.  I would also suggest testing for Lupus, if she has not already had that done.  I am not suggesting Lupus, just suggesting that all avenues for testing be ruled out.

Welcome to the MS Forum.  We would love if your sister also posted here.  She will receive alot of support, caring and compassion.

Best Wishes,
Heather

[speechgeek]

I have these symptoms and I am being lookeda tfor lyme. I had a known tick bite. Pleae read these 3 documents and have repeat tests at IGENEX


http://en.wikipedia.org/wiki/Lyme_disease

http://www.journals.uchicago.edu/doi/full/10.1086/508667


http://www.ilads.org/guidelines.html   click on guidelines.

unfortunately these are very difficult diagnosis to make. These documents will show the difficulty and the contraversy in it all.

She may need to have an EMG.... I have peripherial neuropathy and that is whats causing ssome of those symptoms.

Rebeccah

[jsanzmadrid]

Hi Gollie, thank you for your nice reply! She has not been on any of the ms drugs, as she has been doing fine all these years.

She had her Elisa test for Lyme done 8 years ago, when she was dx with ms.

To date, all three top neurologists that have seen her agree that her heaviness (that come and go hundreds of time during the day) is not related with her ms.

I know there is people in this forum who can give very good advice/suggestions. Thanks guys

[gollie]

Hi:

I havn't seen you here before, so its nice to meet you!
Is your sister using any of the MS injection drugs such as
copaxone or avonex or rebif?
How long ago did she have her test for lyme?  Has she
seen a reumotoligist at all?
Im am abit new to MS and still have much to learn myself.
I ask the questions above in hopes that you can elaborate a bit more.

As there a several other members here that will be able to give you much
better advice and answers.  And I am sure they will be along soon!
So welcome and hang in here,  
                                                       All My Best Gollie