my first post. Its been a difficult and interesting 17 months. Around April last year I became ill, Im normally a very healthy 48/9 year chap who runs, doesn't drink or smoke etc. My illness started after I ran the Manchester marathon I noticed a couple of weeks later that I had a lump on my neck and I was absolutely exhausted.
I did the usual trip to the GP who referred me to someone at the local hospital, he was an ENT specialist who did some tests gave me some anitbs and wanted to see me in a couple of months. During the couple of months the lump went to the size of a tennis ball, I became even worse and over a period of a couple of weeks I went from tired to not being able to walk properly, I would drag my feet behind me, I looked liked I had MS or something like that. I saw the ENT chap again and he did more tests, not really tackling the walking issue at all, just said that well you have a infected lymph node, that will make you ill and tired etc. I got worse and when I saw him at the beginning of august I was on the verge of collapse. I had other lymph nodes popping up and a pain in my abdomen and I could hardly walk without help.
He sent me for a CT scan and a week later I was diagnosed with Lymphoma, I had a lymph node around 13x13 in my abdomen. So, I had chemo from Sept to the end of Dec. The walking issue was investigated by the hospital when I went for my biopsy, they looked for nerve entrapment etc but found nothing. the general advise was dont worry about it wait till after the chemo. So I did. Chemo was rubbish but then I didnt think it would be fun and they put me on very high doses of prednisolone during the treatment which helped a bit but I had to walk with sticks most of the time. On a good day I could walk about 200 hundred yards on a bad day I couldn't get out of bed.
Chemo finished, I started to feel better my walking improved and for about 2 months I was able to walk better. Then in April this year it suddenly got worse again, only this time I had leg jerks and spasms. After a few weeks the spasms moved to my arms and I looked like I was punching the invisible man... all the time. I didn't get very much hep from my gp or anyone in the hospital Id been treated at. The neurologist at the local hospital thought Id had a stroke. I hadn't. I reached out to a neurologist in London UCH who saw me privately (I was desperate for help). He was clear very quickly that I didn't have MS or MND but tested for anti bodies to see if it was related the cancer and invited me back to UCLH for more tests. I went and some more tests later I was diagnosed with FMD. No information on what that was or is just a letter to say you have a FMD. I went back again in August to see him and Ive no idea what he was expecting to do as he isn't a FMD specialist but I guess it was a formality to then refer me to someone else in the hospital. At this point Im still very ill, I had chronic fatigue, couldn't get up, couldn't go out, couldn't walk, couldn't feed myself etc. I also was slurring my speech and couldn't talk properly either,I was a mess:-). The consultant prescribed sertreline and that has helped enormously, after 4 weeks I can walk properly and the jerks have mostly gone but for some reason I still have triggers like crowds, noise I could go on its just weird. Im still tired most of the time.
The FMD appointment with a neuro psychiatrist is April next year which isnt great.
On reflection I think Ive had a chemical imbalance caused by the illness and the chemo and the steroids and its caused all sorts of issues.
Anyway apols for the shaggy dog story but Im looking for advise on a couple of fronts. Firstly is there anywhere else in the country that might be able to help sooner? Secondly, Im self employed and Ive not been able to work for over a year, I am getting better but there is still a long way to go, does anyone know if there is any disability type benefit I might be able to claim?
If anyone else out there has experienced similar then Id love to hear from you