I was reading about Hughes Syndrome (APS) and came across this theory that may be interesting for people diagnosed with Transverse Meylitis.
The cause for these types of symptoms is not clearly understood, but it could be a type of myelitis: a disease involving inflammation of the spinal cord which disrupts central nervous system functions linking the brain and the limbs.
Transverse myelitis is a condition where one particular level of the spinal cord is involved, and can sometimes be a manifestation of an autoimmune disease. If antiphospholipid antibodies are associated with transverse myelitis, it is possible that blood clots occur in the small vessels that supply the spinal cord.
It can be almost impossible to clinically differentiate between MS and APS and, to further complicate matters, the results of MRI scans in both conditions can be similar.
Diagnosis will often depend on the patient experiencing clear symptoms of APS such as severe migraine, previous thrombosis,recurrent miscarriage,livedo reticularis and positive blood test results for antiphospholipid antibodies.
I spoke to a lady with TM around the time I was diagnosed. We compared notes even after reading about it, TM is effectively MS that doesn’t go above the neck but can impact in such similar ways. I don’t know anything about Hughes but I’ll go take a look.
My TM was diagnosed after having a virus. I lost the use of of right hand and wrist and my speech went funny. 2 lesions on brain, evoked potentials were not right but a negative lumber puncture. I was told that if I had another attack it would be ms but that it may never happen. That was 5 years ago. I pray I don’t have another attack.
I was diagnosed with RRMS last Nov. I don’t have major symptoms at mo and wish it to stay that way! My main symptoms are reduced sensation in my right leg and bladder probs. I saw my neurologist in March and asked for a copy of letter, when I received it she mentioned I had had transverse myelitis (she never mentioned this to me!). I had MRI full spine last August not had one for many years!! Apparently it showed involvement there whatever that means. I discussed with her I was passing urine between 11-14 times a day. Have frequency but I also don’t feel I am emptying my bladder properly, I have had a few accidents too which is mortifying! She referred me to a continence nurse which I was very embarrassed about but glad I went. She checked my pelvic floor, which was fine ( never had kids) she also did a bladder scan and said I’m not emptying my bladder properly. Then she started talking about intermittent self catheterisation (ISC)and gave me a booklet, which I found bit overwhelming at time. I have to wait till beginning July to see nurse again so gives me bit of time to think about it. She talked about drugs but felt may be at risk of them stopping me passing urine. Does anyone else do ISC? Is this long term plan or short term? Just feel quite apprehensive about it, but would like to sleep all night too! Any advice gratefully received