Could I have MS?
Posted , 4 users are following.
Had a brain scan 11 years ago which showed periventricular white matter after a possible Tia. Doc in stroke clinic said it wasn't stroke related but she was concerned and said it needed further investigation. Neuro doctor dismissed it saying it is normal in some.people (I believe it is only "normal" to see in over 65s - I was 38 at the time). Loads of symptoms for over 20 years, at different stages. Recently diagnosed with possible /probable Meniere's disease but I am not so sure. Complained for last three years about my legs shaking visibly, violently and uncontrollably but nobody has taken any notice ....until now ! Had an occy health appt and saw a physio who did an assessment. He did neuro tests nobody has done before and was concerned so wrote to my gp. He mentioned clonus, hoffmans test, brisk reflexes. Saw doc on Friday and he confirmed clonus and has asked me to wait while he decides whether I need another brain scan, referral to neuro or what? Various symptoms including widespread pain, previously thought to be RA, fatigue, sometimes extreme, dizziness, blurred and double vision, occasionally loss in one eye for seconds or a few minutes, stumbling, sweating, especially head sweats, involuntary movements as I'm drifting off (have smashed a few glasses and ripped my partners chest and back), diarrhea, getting words jumbled up, and sometimes confusion. I think that about covers it! Lol, oh and a couple of occasions of urinary incontinence, where I haven't even known I have "been", and numbness there, pins and needles in limbs too. That's enough for now as I wonder whether anybody will even see this haha
0 likes, 8 replies
carolyn37817 sandy67
Posted
Please go to your Emergency room now! The symptoms you're describing are serious and you should not wait to see what your doctor decides!! You should be in the hospital getting another brain mri and full work-up. Possibly a spinal tap. This could be ms and you need to be started on treatment right away. Please take care and good luck. Keep us posted.
Carolyn
sandy67 carolyn37817
Posted
Thank you for your reply. I have been to docs so many times, I have presented at a and e when things have been really dreadful and they have just done a few blood tests and sent me home. telling me to follow up with my gp and given me pain meds. I have stopped taking the strong meds now as they stopped working so I just take cocodamol and tramadol now and again when I can't stand it any longer. I don't actually have a choice but to wait till doc decides what to do next as I cant afford to go private. I have had really bad bouts over the years then been able to go back to work doe a while then bad again, but things have definitely deteriorated over the last few months, can't walk more than a few steps now without severe pain from.spine and pelvis, but that could be from an accident I had many years ago. I know i have a prolapsed diac, but that wouldn't explain the periventricular white matter x
bic24773 sandy67
Posted
Hello I have MS and yes it's soundsije you do. I don't know if you're in uk or USA but if it's UK insist on neuro appointment and MRI etc. I know you put haha but I know too you're frustrated and scared. I felt dismissed by my Dr so I write a letter and I've seen my neuro recently and he referred me for MRI (which I had to postpone becausey mum in law died) good luck take a friend to advocate or get a 2nd opinion kindest regards.💚
sandy67 bic24773
Posted
sandy67 bic24773
Posted
I am in uk, just don't know how long all this is gonna take. I have been bounced from pillar to post for years and no definitive diagnosis x
bic24773 sandy67
Posted
Originally I was under orthopaedic because I also have spinal problems & at the tine prolapsed discs. I asked to the orthopaedic consultant "could I have MS" he said "that's why we're sending you to the physician ( which was neuro) I had been having similar stuff to you. The neurologist wasn't pleasant on my initial visit and I cried all the way home, he sent me for further MRI (us had back MRI fir orthopaedic) evoked potentials= that's measuring responses to sight, sounds and stimulation. He told me I had MS afterwards and was pleasant, I told him he made me cry. He was never consistent. Just tell them how you feel, say "I feel unheard" or dismissed or however you feel. It's your life, your health, take a frurvto the Dr ir consultant, one who can speak up if you feel you can't x
sandy67 bic24773
Posted
Same thing -I also have a prolapsed disc which has me.stuck lying on my bed now as even sitting up is painful.I have dragged myself out for a couple of dog walks as my poor dog needs her exercise and she enjoys her walks so much and I love watching her running round wagging her little tail as she explores. The walks are painful, every step and my hand hurts holding my stick, but worth the pain, even though i am incredibly slow and I know i get in peoples way but what can you do..anyway where was I.....yes prolapsed disc, so I wondered whether everything could be nerve damage but then why would brain scan have shown periventricular white matter, that wouldn't make sense -would it?!
So how long have you now known you have ms and how are you managing? Have they said whether it's relapse/remitting or progressive? X
bic24773 sandy67
Posted
I have good news for you, I was diagnosed in 1999 I eas so bad that I had my back operated on in 2004 despite my Neuro saying i couldn't and it helped greatly. Ms is something that likes to 'join in' so whatever else you have MS gets jealous and joins in. Nobody tokd me what sort if MS im guessing recurring remitting as I have symptoms all the tine but gets bouts of stuff. Mum had it too same thing I think but she wasn't diagnosed until I nagged a few years ago. If you're incontinent you should be at theA&E as its probably not MS but disc. Get angry get demanding. 🌹💗