Hi everyone, I tried posting this before but it ended up deleting my whole post somehow before I submitted it so here I am again lol. Sorry to bother you all with my story but I’d appreciate any help.
I just had a MRI two days ago. Still waiting to even meet my neurologist; the GP referred me and got told to go for an MRI before I even had an app with him.
My symptoms have been going on (I think, or it’s unrelated but coincidence then…) since I was 15, and I’m 21 now. My first symptom was bladder problems. I quit my job and dropped out of school after getting no help from drs for 6 months. Eventually after over a year I was told I have an overactive bladder and was put on vesicare and left it as that. It helped, but it would have flair ups still (still does).
When I was 18, I developed shaking in my hands and legs, along with dozens and very sore hands. It lasted about 3 weeks from memory. Because it went away I didn’t think much of it, being young an 18 I suppose. My hands would continue to hurt on and off from this day. I can’t do things like hold a book or a pot handle on my bad days.
More so, now I’m 21 and for the past 6 months things have gone downhill. I have had not much luck with my hands, as in more bad days than good, but it still seems to come in waves. About 5 months ago my legs got weaker (I have stairs at work and they’vee gotten harder to go up) and my arms are weak (even hanging out laundry they feel like they’ve been lifting weights. Lately I’ve been getting pins and needles feelings in my legs, but it’s never both legs at the same time, it’ll just randomly be one of my legs for a few minutes then go away (even when I’m laying down or standing up it’ll happen). My hands hurt a lot, now sometimes I get sharp pains in my wrists, but my whole hand aches (so the GP ruled out carpal tunnel since the whole hand is involved). My feet about 2 months ago developed this thing where if I touch the top of them near my ankle, I feel it in my toes! That was the sign that made me go back to the GP. The first GP flogged me off after testing me for rheumatoid arthritis and lupus and said “nothing is going on, you’re all good, you’re blood tests are healthier than mine!” So I tried letting it go for about a month until one day my hands hurt so bad I couldn’t take no for an answer.
So I saw a new GP and he was fantastic and is the one who said he’s worried it’s MS so yeah here I am. My main question is… does anyone erode have symptoms that come and go throughout the day like this? And just worse days than others? Sorry this is so long. I just feel like something has to be wrong. There are other symptoms too but feel like this is long enough now! Thanks for any help, it’s really appreciated
As I am not diagnosed I can only say what has happened to me,. What I have learned on this site and a few others is that MS is different symptoms for different people, they differ greatly, I have double vision and my hip really hurts along with other things my vision is put right by prisms in my glasses but when I am very tired it gets worse, it doesn’t matter how many painkillers I take I still have a pain in my hip along with my left hand, fingers shake. It’s not all the time some days worse then others. People on this site will be able to tell you about their MS and how they cope. At least you have started on the journey to find out what you have it may not be MS as there are lots of illnesses that have the same symptoms as MS and you have to rule out everything out first to get a diagnosis. When you had your MRI did you have a spinal one too as they my show legions on your spine if you don’t have them in your head. It may take a little time to get an appointment with the neurologist as they are busy people, when you see them they will ask you lots of questions about your health and problems that you may have in your childhood and now if you can write a symptom diary it will help you remember the symptoms and maybe a timeline. They won’t say anything until they have done lots of tests they may also do physical tests to check out your balance and responses. Hopefully they will have had seen your MRI and ask you to have a blood test and lumber puncture to rule out or clarify what you may have. Your neurologist is the only person who can tell you if you have MS. Try not to go on to go on to dr Google they are not very good drs this site is fine they are able to tell you a lot about MS but there are a lot of autoimmune diseases that it could be one of them is lupus. You will find that a lot of people could have the same symptoms as someone else or very different symptoms as it depends on where your body is being attacked some people it’s their eyes or legs. As I have said I have double vision but sometimes my eyes hurt or my arm feels heavy and shakes my balance is not good and I have fell down quite a few times and until this year I found it difficult to get up again with out help but I have been very Ill for a few years. Ask as many questions as you can somebody will be able to tell you what their experience is and maybe some things that could help you in the end. Well good luck and welcome to this site. Kay
Hi Kay, thanks so much for your reply. I’ve had blood tests to rule out rheumatoid arthritis and lupus, and vitamin deficiency and diabetes ruled out. I don’t feel like it’s a pinched nerve or anything because I don’t have constant severe back pain (but do have on and off awful back pain for years). I get random very sore legs (I say it’s like severe growing pains) which will hang around for a few days then stop. My eyes have gotten blurrier over the last year but not sure if that’s just me getting older. I can still read without glasses on but it’s difficult, but in the last 2 weeks I’ve developed black floaters in my eyes that are worst when I’m looking at something white or bright coloured, and notice it more in brighter spaces, but again don’t know if that’s just normal? I sometimes have been recording my symptoms daily. I am just worried they won’t find lesions then stop looking for anything and say it’s in me head. I really don’t think I could handle more of that. The MRI was for my head and cervical spine but no contrast was ordered and not full spine.
Kay is right that MS produces different symptoms for each person. But there are a few constants. First, an MS relapse would last for 24 hours or more and if it’s a repeated symptom rather than something new, should have dissipated for at least a month between occurrences.
Having symptoms that come and go in minutes is a bit unusual. I’m not saying that means it’s not MS, just that it’s less usual.
Keeping a record of what happens day by day is a good thing, it will help you to describe what’s happening to the neurologist when you get your appointment.
And having had the MRI before the neurologists appointment may not be a bad thing. At least the doctor will have some clinical evidence to contrast your symptoms and physical examination with.
It may be of course that the neurologist will want to have other tests done, possibly a repeat MRI with contrast and/or the spine (it’s quite usual for only the brain or the brain plus cervical spine to be scanned). S/he could also ask for a lumbar puncture, nerve conduction, evoked potentials, or many other tests. Or feel confident making a decision / diagnosis just on the information in front of her/him.
Hopefully your neurology appointment will be soon. In the meantime, have you thought about having your eyes tested? If your sight is getting a bit worse, it could simply be that you’re becoming short sighted. Plus, the optician can look at your optic nerve in case there’s anything going on with that.
You shouldn’t count on it being MS or nothing, so you’d be left abandoned with remaining symptoms but the feeling like it’s all in your head. It’s possible the neurologist will say it could be MS, but maybe we’ll ‘watch and wait’ to see what happens. Or the neurologist might decide that it’s definitely not MS, but could be a different neurological disorder. Or of course refer you to a different specialist altogether if it’s not neurological.
i obviously don’t really want them to find Ms but I do want them to keep looking for whatever it is. When I was undergoing all the stuff with my bladder I was so young that no one ever believed me and would always say it’s in my head. And I stopped looking for answers and just learnt to deal with it instead, but now, with so many symptoms, I don’t want to give up looking for answers but I don’t want more drs telling me it’s nothing or in my head. I would rather a bad answer than no answer, if that makes sense. But now that I’m older and I’ve had a baby, I feel stronger in being able to ask for more tests and answers. I know it’s weird for my symptoms to come and go but they still happen daily. Not sure if it’s more that I notice that they’re still there? It’s hard to know. But even things like today when I couldn’t wish eggs with a fork because of my hand pain/lack of coordination. And right now I’m sitting on the couch and my leg is numb.I’m only 21 and don’t feel like it’s normal for a 21 year old but I just don’t know what else it could be. The GP mentioned it being “just” peripheral neuropathy which is “nothing” in his words. But I googled that too and I have nothing that could have caused it (diabetes, alcoholism, etc). So it’s so hard. It gets defeating knowing something has to be wrong but not knowing what, and feeling like you’re deteriorating quickly and not knowing how to stop.
