Hi everyone, I collapsed again on wednesday and mum had to call an ambulance as she physically couldn’t move me! My legs has gone to jelly again, with numb feet. my mouth had dropped, I felt spacey and a new symptom-stuttering and slurring my speech. My hands had gone totally numb again and no grip at all. My local hospital has yet again been pretty appalling!!! I’ve only seen one very nice doctor, who asked me to give myself a drink and it ended up everywhere cos I just couldn’t grip it so it dropped. He asked if I’ve ever had a lumbar puncture before but said he should hand me over to neurologists for their advice. I saw the neurologist today, very briefly as he rushed in and could only spend a minimal few minutes with me as he had others to see and get back to Taunton. He was therefore very blaze’ and managed minimal examination and consultation. However my neuro exam I was told was abnormal and he thought I may have a neck problem causing my leg and arm problems as that’s what was suggested by my neuro signs. So he ordered an MRI of just my neck and told me I’m complex! Yet he then said he won’t c me again whilst I’m in the hospital and to see him in his clinic! (goodness knows when)! Also that the next step was definitely the Burden centre(some of u may have read my posts of the dreadful experience I had there and they r very psychiatric focused) as he didn’t know what else to do for me!!! So, I’m thinking I need to push for someone who does know what they can do for me and do other tests at a specialist centre-what do u all think?! I’m sick and tired of being pushed from pillar to post and never getting anywhere. My relapses are becoming more and more frequent and I need some answers. I’m getting so upset and frustrated that no one is hearing my pleas! Has anyone had similar experiences and what have u done over the years to get a diagnosis eventually?’ All ur help greatly received as always. Much love xZoex P.s. I’m still having all above symptoms except can move my arms a little easier, only able to type cos of my amazing touch screen phone-praise the lord for technology!!!
Morning Zoe xxx poor you xxxx I can’t believe what you are going through! I have never had symptoms come on as suddenly and as severe as that so can’t give you any advice - it must be so frightening for you xx
I don’t know what to say re the neuro! I keep reading about some hospitals that are so thorough while others are totally useless! Are you still in hospital??? xxjenxxx
Oh hon, poor you! Like Jen, my symptoms aren’t so severe or as sudden as yours yet I find mine scary enough. Sometimes you have to go down the routes they suggest if only to help get those things ruled out. The trouble is this takes time - a lot of it. Can your GP be persuaded to find an MS specialist to refer you to? Mine is only just reluctantly coming round to the possibility it might be MS now nearly 2 years into this. Even now, she’s not in a big hurry to refer me to a neuro and has said she would like the rheumatologist she sent me to to finish all his investigations first. This is even after being diagnosed with optic neuritis by an a&e Dr and an eye specialist last weekend who both said I must be referred to a neuro. The rheumy did concede and book me a brain MRI though. However, he’s still looking at other stuff. So, what I’m tring to say is that as MS is a diagnosis of exclusion and detective work, maybe you could try going with the flow and so they can rule other stuff out. Time is the greatest diagnostician as they say. Thinking of you. Keep us posted. Cx
Thanks for ur messages guys. Thing is, they don’t seem to want to try and rule anything out, just put it all down to being in my head!!! They r at least doing an MRI of my neck but that’s the only test they will do. I’m going to b stuck in here for ages trying to go through rehab with the physios but I never seem to fully recover and each relapse I have is becoming more severe. Afraid I wouldn’t go to the unit the neuro wants me to go to even if they offered to pay me a million pounds! It’s like a prison, u r not allowed a phone and u can’t see any friends or family!!! It only seems to be this neuro who seems intent on me going there! No one else has mentioned it. I’m going round in circles and not getting anywhere! Does anyone know of any good neurologists?!!! Thanks as always, x xZoex
Is going privately an option? Cx
Hi Zoe,
I haven’t been fully diagnosed yet but I have had an MRI which showed several lessions. I think I am in a relapse at the moment. My symptoms are no way as severe as yours though. I did have a really awful attack at the beginning of the year. It went on for 6 weeks and the symptoms got worse and worse. I stopped them by taking B12, as I thought it may have been B12 deficiency. It really helped and my symptoms cleared after a week. My neurologist seems really good. He’s based at Kings College hospital. If you are anywhere near London?
I’m in limbo as well until my next scan in November. So I do not have access to any medication either. It is very frustrating i f you think you are in relapse.
Hope things get better for you.
Adrian x
Hi Zoe - sounds like you haven’t had very good care in hospital. Have you thought about a formal complaint I.e in writing perhaps with PALS help? Might get things moving a bit quicker and better. Min xx
Hey hun,you’re back on the forum i see! i can send you hugs on here too, i do think PALS is an idea and also for when you get out of hospital ( cos i know you will ), i have found some info on an Expert Patients Programme which is a self referral thing ( and free!) for people with chronic diseases. Not sure if you have to be diagnosed but I can look into it if you want me to. I did find a neuro in Winchester who is private when I was looking, you want me to message you the details?
xx
Hi Zoe.
Oh my word you really have been through it havent you!
I am constantly amazed at the lack of understanding and support from doctors, GPs and other so called support workers.
Is it feasible for you to go privately? I dont always think the docs are better during a private consultation, but the waiting times are definitely better.
I am so sorry this is happening to you Zoe, its awful and I am thinking of you xx