I think i should win a prize for my patience in limbo land. 25 years ago I developed l’hermittes. I had just finished radiation treatment for hodgkins lymphoma. I had an MRI, LP and VEPs done at Queens Square London and was told all was clear and the l’hermittes was due to the radiation. I forgot about the scare and got on with my life. Then in 2005 I got numbness down one side of my body. Saw a neuro and had MRI and LP - both were clear. Numbness went away. In in 2008 I had what I thought was an MS attack of weakness, slight footdrop when I ran, fatigue and numbness. GP said it was not neurological and after blood tests said it was Hasimotos hypothyroidism so I was put on thyroxine. After 6 weeks on the thyroxine I felt better and felt the GP had been right. Then a year later I started to trip over my right foot after a long walk. Over a period of months the foot problem was appearing after shorter and shorter walks.
In 2011 I eventually saw a neuro who said he thought I had MS but after LP and MRI said it was due to the radiation I had had 25 years ago and not MS There was slight atrophy on my spinal cord. This was not there in 2005.
In 2012 I had a second opinion and he too suspected MS. He said the radiation theory was totally incorrect. I had another MRI and LP . But said he could not dx me as LP was still clear and there was not enough evidence on MRI. He then said that I had suffered transverse myelitis in 2008 and it may become MS although less likely as LP was clear. Anyway from my reading there should not be progression after complete recovery after the attack. The fact I was 95% fine a year after the attack. Anyway I was told this and discharged from the NHS in 2013.
In Oct 2013 my right arm started to spasm - it only ever lasted 2 seconds and occured about 5 times a day. I tried to get back into NHS to see my neuro again but was going to have to join the 6 month queue to get back into the system. So I went back to see the private neuro again who still said it was radiation myelopathy. Now last October I had another scan done at a private clinic. My neuro said there was no change in the MRI. I asked for a copy as I have copies of all the others. He said he would post it for me. Anyway he did not bother and I didnt chase it up. Now 2 weeks ago I was in that private clinic with a friend and I decided to ask them for a copy of my report. She brought it up on the screen in front of her and said that she could not give me a print out without authority from consultant. She also happened to mention “Did you have thyroid checked?” - I said “No, why?” Her reply was then "Oh the radiologist said that on MRI it looked enlarged, but dont worry you neuro must have felt it was irrelevant if he has not had it checked.
I contacted the neuros secretary asking if the could send me the report. After a week of no joy I emailed the consultant and still no joy. I really want to find out what the radiologist said as I have found on the internet that Hasdimotos Hypothyroidism can very rarely lead to Hashimoto encephalopathy which can in turn cause lesions on the CNS. The other symptoms are enlarged thyroid and evidence of inflammation on LP. There was evidence of inflammation in my LP althoubg I was OCB negative. I have also read it can be an MS mimic - especially PPMS.
Treatment is steriods, plasma exchange and immunotherapy. Prognosis is good if caught early - althought I doubt I am in that category!