I’ve just registered here as I had TM about 5 weeks ago now. Went to bed on a Saturday night and woke up Sunday struggling to walk with a huge rubber band around my abdomen (like ms hug) and it’s still here hugging me, not as hard but reminds me if I do too much!
Mobility improved but sensations of pins and needles, hot and cold, sensitive skin to touch on left abdomen and leg. I have vertigo and have had it since I had labrynthitis 12 years ago. I had 3 MRI scans within 2 weeks, whole spine then from T5 up then brain - they found lesion on T5 and nothing else so neuro diagnosed TM. Radiologist mentioned in report could be ischaemia or TM but neuro said that was only in context of what they had seen on mri. I also have been a little slow to think of words I wanted to use when speaking and speaking, get tired quickly and brain fog. No issues with my eyes though but going for LP and eye tests next week. I had 5 days of steroids then on gabapentin x2 a day.
Reading through all your stories and experiences shows that it is not always a clear diagnosis and you are all superheroes in your own right!
Interested in your thoughts
Best wishes to you all!
Hi w.a76, welcome to the community! Your symptoms sound challenging, but it’s great to hear your mobility has improved. Stay strong, and I hope the upcoming tests provide more clarity for you.
TM can have many causes- Infections, viruses and bacteria, autoimmune conditions throughout the body and immune system central nervous system based including MS. Worth looking back over the days and weeks prior to you getting unwell and if there is anything you can recall.
I had high TM near my neck and affected everything from the neck down. Weakness and also ice cold/ then pins and needles/ temperature/ scalding sensation. In my case pretty early on they diagnosed it as transverse myelitis, then said it could be demyelination and MS was the most likely based on scan appearances. Along with vision and eye changes I had every single MS symptom and the TM has affected the body below the level a lot. After brain lesions seen on MRI brain and Lumbar puncture they tied it together to make the diagnosis of MS and started a DMT.
Hopefully when they do your lumbar puncture and blood tests they will screen for infections, and you should have some more answers as to whether its likely neurological coming from the central nervous system around your brain and spinal cord, or not.
I think TM itself can causes hug like pressure uncomfortable crushing feeling at the level it is affecting, regardless of the underlying cause. It is good you don’t have visible brain lesions on MRI scan. If these next tests come back inconclusive/ negative for MS or the other autoimmune and neurological diseases I think they would call your case Clinically Isolated Syndrome (CIS)? where they can see one area of the spinal cord but no clear brain lesions etc. If this is the case they would offer follow up options to re scan etc in so many months time.
Dealing with uncertainty is difficult… it sounds like you are doing all the right things and considering all symptoms which could be relevant. Keep us updated if they come to a conclusion.
Thanks for the advice. I have all blood tests back and all negative so VEP on Saturday then LP next week and second opinion next Thursday as the neurologist seems more interested if my wife is attending the next consultation than me! In addition the second mri is now being reviewed by a neuro radiologist as opposed to general radiologist. It’s frustrating though we all have to fight for a bit of effort and questioning how and why consultants come to their conclusions of our diagnosis. Perhaps if it was their lives and understanding early diagnosis results in better outcomes their approach would be different…the medical profession in my view has lost its focus on patient outcome and unfortunately more focused on private practice fees.
Best to you all!