posted
My daughter went for an EMG today and was told that she has no peripheral neuropathy, but probably has central nervous system issues. I pressed for answers about what that meant.
The topic of myelitis came up, which I was told steroids are used to help correct. Of course we know that steroids are not recommended with lyme.
When I got home I researched myelitis and stumbled upon transverse myelitis which fits what my daughter has. She has been in a wheelchair since 1/09, before then walking with an ugly gait with the use of a walker. In 1/09 she also started with bladder issues such as not feeling the sensation to urinate, but having a full bladder.
Transverse myelitis is an inflammation of the spinal cord which can be brought on by many things but particularly lyme disease. At the thoracic region (where she has a problem on her MRI T8 - T10) it can produce weakened legs, inability to walk, pins and needles in lower extremities, water temperatures feel differently on legs than arms (ex. she says that warm water will feel scalding to her), bladder issues like she has, delayed response to brain commands. She can wiggle her baby toes but it takes extreme concentration (several minutes) to get them to move.
You can also have this at the cervical region and have problems with your arms and below, but her arms are fine.
I also read that if steroids don't work, then you can use IV Ig.
The MRI was done before she was diagnosed with lyme (9/11/08) and we were told by the hospital neurologist not to worry about what they found. Well now I am worrying because if this doesn't get treated soon, there may be lifetime disabilities.
I have mentioned this to our neuro's office, and they have requested her MRI images. I will call daily until we are heard.
Her bloodwork shows that she is getting better from lyme (no more babesia or bartonella and some Western blot bands have disappeared), however, she is not feeling better, and perhaps this is the reason why because she has this condition which now needs to be treated.
Has anyone else come across this? If so, please share your stories. Thank you very much.
Lisa
Posts: 51 | From Connecticut | Registered: Sep 2008
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posted
Hi i have had pretty much identical symptons of your daughter except mine was caught intime before it progressed to me being in an wheel chair. At one time they thought i had transverse myletitis and my EMG was the same as hers ( no peripheral neuropathy).
pretty much started as a gait also with numbness, weakness and pins and needles that started in one leg then spread to the second leg then into my abdomon to the point i could not urinate eventually it did spread into my arms but not severe like my legs. All this happenned over a period of about two months than cleared up but then returned again with
identical symptons a few months later. It took almost a year of antibiotics before it cleared up but i still occasionally have some minor neuro flares here and there. I tested positive for Rocky mountain spotted fever which i believe is what caused these neuro problems. I'd ask
your LLMD to test her for that if he has not already. Also excactly what did they find on her MRI?
Posts: 37 | From Ohio | Registered: May 2007
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jt345
Unregistered
posted
Sounds like My sisterin law. But She will not even look into lyme. She has MS and She seems too be content to sit in Her chair,and have MS.
as a child She had tested positive for lyme,treated for two weeks,cured,and surprise surprise,at 35 she comes down with MS. Wish I could throu too Her. appleseed
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posted
Thank you. Our "prominent hospital" that ran the MRI in 9/08 found between T8-T10 there was some abnormality with vessels on the dorsal side of her spine. This fits the description of transverse myelitis.
According to the treatment recommended, it is steroids, then if that doesn't work, IV Ig. I know steroids are not recommended for lyme, but I have to get her to walk.
She has great muscle tone, muscles work under stimulation, and she has been in therapy since last August working the muscles, so these are all good things in her favor.
Posts: 51 | From Connecticut | Registered: Sep 2008
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