I know many people go through this, but I am really struggling with being in limbo, with my current symptoms and with fears for the future.
I had an MRI in November and saw the neurologist in December – a new area of inflammation was found (he called this transverse myelitis). This is my third episode and by far the worst. At this time I had numbness, tingling and pain on the left side of my body and my left leg as well as fatigue and balance issues.
I had numerous blood tests (no issues found) and was referred for a lumbar puncture, which I’m still waiting for.
There was an improvement in my symptoms for a while but in the last few weeks I have had numbness, tingling and hot and cold sensations in both legs and also some bladder issues. As advised, I let the neurologist know and have received a letter today to let me know he is requesting a further MRI.
Suddenly I feel as if I just can’t cope with this any longer!
In the last letter he sent to my GP, he indicates that I may have an unusual presentation of MS or possible neuromyelitis optica. I think the NMO is now ruled out by blood tests. He didn’t explain what he means by “unusual presentation” – I am 52 so a little older than the average age for diagnosis – not sure if that’s it? My brain MRI showed some “tiny white spots” which he did not feel were significant (no white spots on MRI 2 years ago).
I also have Hashimoto’s and before this current episode, was considering LDN (my antithyroglobulin antibodies are high). I’d still like to give this a try but am not sure whether I should wait until after my lumbar puncture? Does anyone know whether LDN will interfere with the outcome of a lumbar puncture?
I’m sorry about the very long post. I don’t really have any particular questions but just needed a safe place to talk about how rubbish this is! I am usually an upbeat positive person but feel I have lost a bit of myself over the last few months. I am desperate to get on with living again but feel like life is on hold.
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