Please help I have lots of sympoms pins n needles numbness blurred vision dead leg can’t walk prop jaw aches Bite my mouth when I chew food headaches - fatigue like I can’t move for it Can’t even wash my own hair a Di can’t hold my arms up I have has 5 attacks now in about 18 months but the newest started Monday with an unbearable tightness under my left boos n half way down my back I could not breathe for it - ambulance came I’ve been in hospital since My Neuro thought it was ms on my Neuro exam alone n orders MRI or brain n spine n lumber puncture to confirm MRI is clear n lp Is clear of everything except bands that will be another week Nurse n doc don’t believe me I was on all fours screaming in pain I have hacked my arm to peices to just take the pain somewhere else They said there is no way I can be in that much pain as MRI was clear They took my morphjne n have me on Valium Brufen paracetamol n gabapenton It’s not working n I’m ashamed to say I want to die now I have had pain n disability too long now I’m 35 with four kids n cannot cope any more Has anyone been diagnosed with clear MRI n lP Please someone help me I’m desperate to hear other opinions on this Apologies for any typos i have double visions so badly I’m meant to go home today n can barely make it to the lol anymore
Hi, oh dear, you are going through it eh?
It isnt conclusive when tests come back normal.
Mine were all normal, after 14 years and now I am diagnosed with Spastic paraparesis…cause unknown, although it could be genetic.
You need help to look after your children. Have you got good family and friends to do this, while you are so poorly?
Hope the valium helps calm your fears.
You need to be strong…in mind and body.
Dunno what else to say.
If you read posts on here loads of people have clear MRI’s inc me. Is your Gp supportive? You do not need to have a confirmed Dx of MS or what ever to get help for your symptoms. Have you seen your Gp or been to A & E when things are at there worst? I try to take things a day at a time I too have kids aged 10 and 13 and it is hard sometimes, I just take it a day at a time. Take care and look after your self
Thank u both for replying I am on hospital at the minute and have been since Tuesday I am on morphine and unable to even walk to the loo I have a neuro appt tomorrow morning but the staff here although sympathetic keep telling me I should not be in pain as I don’t have MS as a clear MRI means a Defo no I think I’m having the 'ms hug ’ which is not a bloody hug its like I’m being choked n it’s causing me horrific pain to breathe I’ve had 4 kids with not pain Relief but this is worse I don’t want to live like this Without a diagnosis will they give me diseas modifying drugs?i can’t stay in hospital on morphjne forever I have 4 babies and I’m aching to see them Can I be diagnosed on symptoms alone Please please someone help me J x
Poor you, it’s ok them saying you should not be in pain if you are, you are the one who knows! Hate hospitals and Dr’s, some thing that MS does not cause pain. If I was you I would say, right so you say as MRI is clear I do not have MS so what do I have? Why can I not walk? No DMD’s without a firm Dx and even then you have to ‘fit’ into right boxes to get them. You can be Dx on symptoms alone but only after more than 2 really bad attacks separated by time. But they do not like doing this. My Nuero said a clear MRI could mean PPMS, this means you get worse over time. My sister had a clear MRI and LP but was given a Dx of PPMS which was then changed to RRMS, she got her Dx 18 years ago after a mega attack and stay in hospital and steroids- she managed to walk out. But criteria has changed since then. Have you had neck and spine MRI? Not all lesions are shown in the head. Can you see an MS specialist? General Nueros say MRI clear so no MS, a specialist will look into it more. If the hospital you are in does not have one and you can not get reffered it costs about £250 to go private. Good luck and fingers crossed that you get an answer soon.
Thank u I am on way to neuro doctor just now appt is 9.30 MRI was Brain n spine On morphjne ganapenton brufen n diazepam This is my 5th bad attack in 18 months maybe Neuro told me before my MRI he was quite certain it’s ms based in Neuro exam alone My personality has changed also And vision is dreadful Any tips for when I get there today u help is much appreciated Julie x
My Neuro says I don’t have a lesion then I don’t have ms I had brain.and spine done but they want me to get a other MRI low spine. But won’t tell me what they r looking for I actually feel suicidal nkow I’m still in hosp they reuse me morphine which helps me squeezed feeling. In trunk Pls help me
The neuro clearly believes that there is something going on so don’t lose hope. A spinal scan “lower” may be thoracic and/or lumbar spine. I guess they aren’t telling you what they’re looking for because they aren’t sure themselves yet They can’t believe it’s an emergency or else you’d have had your scan already, so you can at least cross a tumour off your list of worries. The squeezed feeling sounds like the hug. If they won’t give you morphine then perhaps it’s worth trying a muscle relaxant on top of what they will give you? Maybe ask? I hope things improve soon! Karen x
Thank u for your reply They won’t let me out hospital whilst they investigate I can’t walk anymore due to numbness in leg they want the MRI low alone ASAP I’ve been screaming pain for four hours n they keep bringing me Valium they Put a drip in my arm n have not have me morphjne I cannot take four five hours of this girdle pain very nights Death seems my only option now
Hi Julie It absolutely is NOT your only option. Everything seems bleak right now but you are in the right place and as you said, they are not going to let you while they investigate so it sounds like they are at least attempting to find some answers for you. And you have four children who will be as desperate to see you as you are to see them. You have to battle on and stay as strong as you can for them. You are their world so you have to stay in it for them. And rest assured that we are all on your side and thinking of you. Sending you ((((((()))))))) Xxx