Hello,
I am 22 and female.
For a little over a month now I’ve been having a variety of neurological symptoms. Starting at the end of February, I developed an itchy/stiff right hand a week, this stopped and instead I felt like a muscle at the side of the hand was being squeezed. This also went away but for ten days afterwards I had whole-body fasciculations, a very slight tremor in my right hand. These stopped, then I had perceived weakness in my right arm for two days; that finished and I had perceived weakness in my ankle for about a week which has also ended now; to be replaced with a strange stiff feeling behind the knee - though I can still walk fine, there’s no clinical weakness. I had some pain in my spine (not L’Hermittes) and both sides of my feet and arms over the past couple of days, less so today. I have had 2 clear OCT scans. My iron, B12, et cetera are on the low end of normal. Because of the variety and rapidity of symptoms and the fact that they come and go (plus I have had 3 GPs do some basic neurological tests and they’ve all been fine) I thought MS wasn’t a possibility. However, at my last GP appointment the doctor said that there’s also primary progressive MS (which he mentioned is of course untreatable), which I’m now afraid of due to the jabs of the feelings in my spine, the quantity of symptoms, and the fact that I’m having small stumbles more frequently now with my right leg, which I know is characteristic of PPMS. It feels stiff and a couple of times a day I can get pain in the thigh or calf. I am convinced that I have PPMS and won’t be able to walk within a few years without ever having dated or had a family or a proper job. At university so won’t be able to get a referral to a neurologist or an MRI for two months, I don’t know how to keep going in my final year when all this is happening and there is a possibility I will become severely disabled by the time I am thirty. I can’t imagine that there is a possibility that I will never feel normal again.
Just thought I would post to take my mind off of it somewhat.
Hi there and —— OK, you seem to have rushed ahead and decided you have MS and that it’s PPMS!
I’m no medic but the symptoms you describe and which you have been experiencing for around a month could equally be Relapsing Remitting! Or - they could be caused by something other than MS!
With RRMS symptoms do die down ( although not completely) but it can take weeks or even months . From what I recall some 18-19 years ago it took around 6 weeks for significant improvement and maybe getting on for 6 months for near full recovery. I’m not quite sure why you say that stumbling is characteristic of PPMS ? Could equally be RRMS .
I was diagnosed around 19 years ago with RRMS ( probably now Secondary Progressive) . Now 71 I can still walk (OK - only for 10 minutes or so) .
I was diagnosed in my late 50s - which is supposed to be bad news and I’m on one of the very early and least effective Disease Modifying Treatments ( newer ones are a lot more effective!!). So, I guess my basic message is don’t rush ahead ( and don’t write off your future!)
If ever there was a case for ‘keep calm and carry on’, yours would be it. Just because it can happen doesn’t mean it’s going to happen to you.
Uncertainty is part of the human condition and even in your short life it is not impossible that one of the students at your university will have been struck down by sudden illness and died while you’ve been there - I remember well that happening when I was at university 40 years ago and a horrible shock it was. But the other teeming hoards of students on campus were still alive and kicking (me included) and the teeming hoards at your university are too (you included also) and these things and the possibility of disability or death are a salutary shock to the system that we do well to pay attention to and also do well to then pack away in the back of our minds while we get on with our work and our lives.
If you are nearing the end of your first degree or nearing the final year of it, you have plenty to occupy your mind, and I know it’s hard but work can be a blessing and a powerful antidote to the kind of grim rumination that get a person nowhere but can cloud one’s days. I hope that the tests you probably have ahead reveal nothing too much amiss. In the meantime, please try to assume the best rather than the worst.
Thank you guys for replying. I have a neurology appointment at the end of May, just hoping my leg and walking gets better shortly and it’s not PPMS. If it is primary progressive I don’t know how I would cope. I would have accomplished everything I ever will, and be effectively finished with life at the age of 22. Currently I have been getting upset seeing old people being active and families with children, because there is a chance that I will never experience that. Imagine graduating university and being on course for carers and assisted living for the next forty or fifty years. I feel like I’m in a nightmare, when I should be enjoying my spring I’m fixated on my leg pain and other symptoms instead. I’m sorry for being a bit irrational maybe but I just wanted to put my feelings down in writing again. Thanks.