After six months of lurking and joining the other day I thought today I’d share my story with you all… My symptoms started aprox 8 years ago with pain in my lower back and down my legs with numbness and tingling in my hands so I went to the GP after a few months and got prescribed pain killers. Over the years the GP sent me for pyshcio (sorry for the spelling) then I was being put in traction etc etc which made the pain worse. Then after an x-ray of my back it shown a slipped disc so the doctor just fed me tramadol and even though I was on them I started to experience Fatigue Sharp stabbing pains in my back arms elbows hands knees and neck Burning sensations in my feet and legs and felt like I was walking in concerete Constant headaches Walking into things Foggy vision Falling over for no reason Numbness in my hands Dropping things Feels like every hair on my body is standing on end And my muscles spasium like mad So 18 months ago I had my first MRI which shown swelling in my brain and spinal cord (got referred to a spine surgeon who sent me for MRI ) and when I had the follow up appointment she said "I’m sorry to tell you your life will never be the same again and I’m refering you to a neruologist After visiting him for the first time and only got asked my name and address and told I’ll be having another MRI I was shown the door and waited for another scan with the injection they use to highlight things. So I went back for my second vist asked how I was feeling I just started to tell him and he said I now need a lumber puncture (this was four months ago) I feel like he isn’t interested in what I have to say and in limbo land with him. So two weeks ago I had a follow up appointment with my spine surgeon and I asked her what she thought it was and after a lengthy chat with the neuro on the phone she said its not concerete till the lumber puncture but she thinks MS I’m currently on 2100mg gabapentin and 60 mg of baclophen and morphine patches also I just finished a 12 day course of roids and I still feel like c**p. So I’m hoping I will have my appointment soon and get it all confirmed so I can get on with my life Hope all is well with everyone
Phew glad I got that over and done with…
what a nightmare you have had.
if it is ms you will be told what type. if it is relapsing remitting you’ll be asked to choose from 3 or 4 DMDs.
it’s a strange thing to say but when i was given my diagnosis i thought “thank god”.
4 years later i still think of that limbo time being the worse.
oh i can moan but why not?
Thanks Carol its also hard when you see yourself getting worse and all the hospital do is drag their heels. Five times out of ten I’m using a crutch to walk around with in the mornings and evenings cause I’m not that steady on my feet. Just wish they would hurry up but most people are saying that also Xx
Like the attitude of getting on with life.
If you do get the ms dx getting on with life is what you will need to do. The only difference from the day before is you will now know why you need a crutch to help you walk.
Its life changing yes but not life threatening,and I think most people feel guilty about the relief of dx.
Its just the getting out of limbo is such a relief and knowing what is causing all these weird things that mostly others cant see,but you can now explain why they happen,and justifies its not all in your head.
Its a pain that the road to firm dx is so long,and that limbo is a terrible place to be but it does give you time to adapt to the possibility.If you do get the dx then gps and neuros will be more willing to address symptom management,and if you meet the criteria then dmds.
I hope you get your answers soon
Sooooo tired the last few days. Like for instance today (I’m a taxi driver by the way) I drove from Swansea to bristol airport and back and a few months ago I’d do it no problem but today youd swear I pulled the bus back and fore by foot I’m so tired and in pain Hope everyone is well
I am not surprised you are fed up, I really hope you get some answers very soon.
Have only just seen your post, can relate to you in so many ways, my symptoms are very similar to yours & i’m still in limbo land, I’m still awaiting my MRI appt as I just couldn’t face the closed MRI so i’ve now got to travel over 70 miles (one way) to an open MRI machine. I just want to know what is making me feel like this, people have asked how I will feel IF I get a firm diagnosis of MS & yes I’m mixed as I’m scared but at least it will be an answer to why I’ve felt like this for so long now.
Wishing you all the best in getting answers x