Forum

Nearly there?

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.

Hi, it seems to me that your neuro has seen some inflammation on your scan & wants to discuss this with you. He’ll need to have all your test results in front of him before he’ll give you a diagnosis…possibly not even then, it’s very difficult to diagnose MS, so he’ll want to speak with you. Keep a diary of all your symptoms & try not to chat to MrGoogle, he may not be your friend at the moment!

Rest as much as you can & I hope it’s not too long before you see your neuro

Rosina x

1 Like

hi

looks like you’re playing the waiting game again. i hope its not for too long.

however your symptoms need to be managed.

see your gp and ask for neuropathic painkiller such as pregabalin or amitriptyline (be warned they can make you drowsy)

ask for referral to the bowel and bladder clinic or you can self refer.

if you are retaining urine it can lead to an infection - bleurrgh!

good luck mate

carole x

I agree with Rosina. I would guess that the neurologist is being reassuring by confirming that you haven’t got something that needs urgent attention like a stroke or worse. For sure, inflammation on the brain and/or spinal cord are something you see in an acute MS attack, but the neuro said himself that MS is only one of the possible causes. Hard as it sounds, I think you need to get an appt to talk to him, and try to keep an open mind until you do.

Good luck.

Alison

Hello all

When I was told I had MS, and once I started to find out all the symtoms , which I had . At first it was a relief,and I just wilted . I had been pushing and trying so hard for such a long time and there was nothing left, my body just would not co - operate .I had been ignorring and hiding everything it took me a long time to go to my GP, then even longer to list all the things wrong with me . I can remember episodes starting as far back as my early 40s so I am assuming that they were relapses ,if I had,nt been so stuborn I could have been diagnosed sooner. So first treatment steroids which made me feel great when I was on them, then back to the begining awful when the course ended. Now I am on injections , AVONEX which I was told would slow the progression , but I do,nt think it is working . Everything has got so much worse over the last few months . I see the neurologist next month so he may stop it , my ms nurse thinks it could be the AVONEX having an adverse affect . If it is I don,t know what is next . Hopfully it dosent involve needles .

Kind regards

Hello,

thanks everyone for your reassuring messages. I saw the neuro and he said he thought that it was ms but couldn’t be sure so he referred me to a specialist. I saw the specialist this week and he confirmed the diagnosis. I must say that whilst it was a relief to have definitive answer that I am more scared than I thought I would be. Reading the material to make the decision about what treatment to go on really made it hit home that this is something that isn’t going to go away.

Anyway, thanks everybody, stay well.

I am sorry that you have joined the club. These are tough times for you, but don’t lose heart: you will not always feel as troubled as you probably do now. Life goes on, and normality reasserts itself and we find that we’re more resilient than we think. An MS dx is a bad blow, no question, but a person can make a good life for himself with MS. You just need to give yourself and those closest to you time for the shock to pass. Hang on in there.

Good luck with it all.

Alison

Sounds like you are a week ahead of me. I am expecting the outcome of the mri, lp and eye test. 6 weeks ago i was working and now i am cream crackered after a short walk or mowing lawn etc… had symptoms for 7 years after a car crash but i thought i was just lazy and unfit, but after jumping on my exercise bike i am not getting any fitter and cant stand up after 10 minutes pedalling. Its a tad worrying what i will be like in another 6 weeks. Try telling this to my dr and she tells me to go to a and e for steroids… i went but refused them, glad i did.