Unexplained Paralysis

[JD37]

About 9 months post. Began with being very tired and lower back pain for a few months. Finally admitted to hospital after arguing with my family doc who said I only had a bleeding ulser and was paralyzed the next day. Started at my feet and progressed to the T-8 level over several hours. Original diag was transverse myelitis. However, the docs at the TM center of Johns Hopkins don't think its TM because the MRI still shows an abnrmality (presumed swelling) 8 months later and TM swelling usually subsides by that time. Also, my brain stem was involved and that is not typical for TM.

They have ruled out blood clot, stroke and tumors. Spinal fluid is now normal as compared to 9 months ago. Also tested negative for a laundry list of infectious diseases.

They are scratching their heads on the cause. I have antiphosphilipid antibody syndrome and have been pushing for some treatment of any kind. May be starting a 3 month course of Imuran in the next two weeks and I am also pushing for plasma exchange therapy. The are not hopefull about either.

This is very discouraging not knowing what caused this or how to treat it. Any help is appreciated. Thanks

[Wise Young]

JD37, there are many more of these kinds of cases than is reflected in the medical literature. As you know, the antiphospholipid syndrome has many forms. I assume that you are positive for the lupus anticoagulant, anti-cardiolipin antibodies, and anti-beta2GPI.

I also assume that you got steroid therapy when you were first diagnosed. If so, the next step is Imuran therapy and I agree that plasmapheresis should be considered if the condition be progressive. Are you currently on anticoagulation therapy? If not, I think that it should be considered. I think that you are getting recurrent ischemia of the spinal cord.

I post abstract of relevant articles in the Transverse Myelitis Research Forum http://carecure.org/forum/forumdisplay.php?f=40

Wise.

[This message was edited by Wise Young on 06-22-03 at 09:49 AM.]

[JD37]

Thanks for the reply. Yes, I had steroid therapy. My bloodwork is now normal which includes the AntiDNA....it was positive. Yes, I am on anticoagulation therapy. The latest MRI (3/27) states "...collagen vascular disease, ischemic or neoplastic eitology is considered unlikely."

Also, can you please define what is meant by "minor ehancement" with regard to abnormal signal intensity and expansion. Is it better to have minor enhancement or significant enhancement?

Also, following contrast admin. there is minimal enhancement.

The abnormality is from about T-7/8 inferiorly through the conus.

Thanks
JD

[Wise Young]

enhanced MRI signals usually means increased water content (since magnetic resonance is based on hydrogen signals and water has a lot of hydrogen). It can occur if the tissue is edematous (have increased water content due to swelling), loss of cells or increased extracellular space, or have increased vascularity. Contrast enhancement should show up if you have increased vascularity and thus this rules out that possibility. So, the enhancement reflects tissue damage and possibly continuing edema. The latter should resolve over a period of several weeks. Likewise, increased extracellular space should resolve over a similar period.

The fact that there is still enhanced signals in the spinal cord suggests that you may be still having ischemia and there are cells that are alive there but are responding to the ischemia.

A thought just occurred to me. Did the radiologist rule out the possibility of an arteriovenous malformation (AVM)?

Wise.

[JD37]

Thanks very much for your help. I am interpreting this in a positive way and it is the first positive news I have had since this nightmare began 9 months ago.

There is no mention of AVM on the 3/27/03 MRI. But it does state, "No intradural or extramedullary lesions are seen. No evidence of flow voids to indicate underlying vascular abnormality."

On the 9/7/02 MRI it states, "Other etiologies include vascular etiology such as infarction or edema secondary to a dural AVM."

[Wise Young]

JD37, what I would look for in the MRI is the presence of dilated veins on the surface of the cord. These are usually apparent on MRI, if there are AVM's present. Wise.

[JD37]

Wise, no the MRI's do not indicate the presence of dilated veins. Nor is there any mention of AVM other than the brief statement I noted on the 9/7/02 (onset of paralysis) report.

Over the past 3 weeks I have begun to notice a tingling in both legs and feet caused by physical stimulation. I have no sensation to touch or temperature from T8 down. Any thoughts on this?

I do have trace movement and my legs can make a walking motion which is evident in water therapy.

[Wise Young]

JD37, I think that you are improving and that you have done almost everything possible to rule our preventable progression. Wise.

[joeyhoss]

I Have a similar problem. I started going numb about 7 months ago, and have all kinds of test ran. I can't tell you how many test ran, but all come back normal, they can not explain why I am numb. My local neruo sent me to UAB and the lady there just wrote me off as being because of my gastric bypass 3 years ago. Said that I had a vitiam deffincy, but I don't understand when all my levels are normal. that and she gave me a cream that is suppose to help the numbness. Which I don't feel my arms and from waist down now. I was diagnosed as TM possiably MS, but no one actually knows.

I know that it is getting old and tiresome of just going to doctors and getting different answers everytime. I have to avoid stress and heat. And a lot of walking all effect me very much, I have pretty bad reactions when I encounter those. I loose all my balance and can't think straight.