Hi, first time I have posted. Many of the stories on here sound familiar so I thought I would share mine if it is helpful, and perhaps help me make some sense of it. 34 year old man.
It first started last year around October/November time I was suddenly feeling extremely tired for no reason and started having muscle weakness in my legs and arms. I went to a gp who ordered some blood tests that showed slightly decreased folic acid and raised lymphocytes (I think), My gp thought I possibly had a virus and prescribed folic acid supplements, as a young man collecting them from the pharmacy it caused much mirth as they are normally given to pregnant women! My symptoms seemed to disappear so I thought nothing more of it; then over Christmas I started to develop some extremey odd sensations in my left hand, arm, and shoulder. Tingleing numbness and sensations on my skin like an itch that wouldn’t go away, and I became very sensitive to cold water, I had also started to become quite clumsy with my left arm and was tripping over occasionally. Another visit to the gp convinced him to refer me to a neurologist.
My first appontment with the neurologist was in early March, he thought that I may have a trapped nerve and ordered an mri of my head and neck that I had a few weeks later. Then I got a letter asking me to make an appointment for another mri this time just head, I assumed that they had lost the scans or something. A few weeks later I got a letter asking me to make a second appointment with the neurologist.
This was at the end of May and by this time I had had the symptoms in my left arm for six months and it was becoming quite painful at times so I was really hoping for “trapped nerve, take this pill or have some physio or operation and all will be well”. But what I got was “the mri didn’t show any trapped nerves but there are some spots on both scans that I am concerned about and would like to investigate further, first I would like to rule out ms”. My mind went a bit fuzzy at this point and I don’t think I was paying proper attention. The doctor started saying things like ‘I’m not saying you definitely have ms’ and ‘there can be many reasons for iflammation’. He then said he was ordering further tests. I wandered off in a bit of a daze. Up until this point I hadn’t connected any of the earlier symptoms I was just bothered about the pain in my hand and arm. Then I started reading about ms and obviously making all the connections and jumping to conclusions, the internet is both a wonderful and cursed thing.
The last few months have been pretty harsh, the fatigue came back with a vengeance and the pain started to get worse, all the time I was telling myself that it was all in my head and I was a fraud. Luckily my work have been wonderful, I have been off and on work because when I am there I feel terrible and when I am at home I don’t feel ill so feel like a fraud again. The pain has now spread to my right arm and both feet, in the last couple of months I have had problems passing urine and am now officially the clumsiest person I know.
All the time the not knowing gnaws away at you. I had a VER test in June and an LP at the end of July, the staff in the clinics are all wonderful but all the time the not knowing gnaws away at you.
Today I finally got the letter, here is what it said. “I now have the results of the tests and these confirm my suspicion about the possibiity of inflammation in the brain. I will discuss the results further when we meet but no action needs to be taken immediately.” I’m not sure what to make of that really, does that mean there is inflammation? Does that mean it is ms? I guess I will have to call the secretary on Monday to make another appointment, I desperately hope I won’t have to wait another six weeks.
Thanks for reading for anyone who has made it this far, any thoughts gratefully accepted.