zoe831
New member
- Joined
- Feb 24, 2022
- Messages
- 5
- Reason
- DX MND
- Diagnosis
- 04/2022
- Country
- UK
- State
- UK
- City
- london
Hello all,
I've had a really crazy couple of years. In Dec 2019 my back locked out of the second time in TA training. This time it didn't get better by the May 2020 my legs both had pains down both and I could hardly walk. I developed cauda equina syndrome, operated on emergency. When I woke from the operation I could not feel my right leg and my two toes wiggling on their own, CFS leak. It took me two months to learn to walk again and to get my foot moving, although I do have slight reduction in my right side now, numbness and excruciating pain down my right side. Three months later had a second operation again complicated with the CFS leak he did the next level down. I have no change on this operation.
The time of my first operation I've noticed my right hand locking out and freezing when it was cold out of an under `a tap. When I was eating my right hand with spasm out and I'd have to peel it. I was so busy trying to get myself better from my spinal injury that I had taken much notice and thought it might be carpal tunnel. But then that year later it started to go into the left hand and now it's at both arms and the tops of my arms I've got excruciating pains pains down into my fingertips muscle wasting, twitching. Ive not conduction blocks or antibodies showing. Anything that showed up was a gad 65, have a neurologist said that he might be a false positive as I had IVIG treatment.
Had two rounds of IVIG is not much success, I thought from my twitches do seem to have calmed down a bit but still getting them. I'm due for another round at the end of March. As you can imagine my mind is going crazy they have said on paper I look like I do have ALS she would've thought that would have developed faster, I've got a little less weaker in the 6 months but pains and spasms in feet(maybe from his previous operation) my hands are getting much thinner and I've noticed today that my right little finger I can't spread out I can meet every the way but not outwards, the fatigue is horrendous and the spasms at night time in my feet and ankles are killing me and my shoulders are hurting from arms pulling down.
Can anyone else going advice on where I can go is this? Anything else to test or try? How long does it normally take before they get a definite diagnosis?
I've had a really crazy couple of years. In Dec 2019 my back locked out of the second time in TA training. This time it didn't get better by the May 2020 my legs both had pains down both and I could hardly walk. I developed cauda equina syndrome, operated on emergency. When I woke from the operation I could not feel my right leg and my two toes wiggling on their own, CFS leak. It took me two months to learn to walk again and to get my foot moving, although I do have slight reduction in my right side now, numbness and excruciating pain down my right side. Three months later had a second operation again complicated with the CFS leak he did the next level down. I have no change on this operation.
The time of my first operation I've noticed my right hand locking out and freezing when it was cold out of an under `a tap. When I was eating my right hand with spasm out and I'd have to peel it. I was so busy trying to get myself better from my spinal injury that I had taken much notice and thought it might be carpal tunnel. But then that year later it started to go into the left hand and now it's at both arms and the tops of my arms I've got excruciating pains pains down into my fingertips muscle wasting, twitching. Ive not conduction blocks or antibodies showing. Anything that showed up was a gad 65, have a neurologist said that he might be a false positive as I had IVIG treatment.
Had two rounds of IVIG is not much success, I thought from my twitches do seem to have calmed down a bit but still getting them. I'm due for another round at the end of March. As you can imagine my mind is going crazy they have said on paper I look like I do have ALS she would've thought that would have developed faster, I've got a little less weaker in the 6 months but pains and spasms in feet(maybe from his previous operation) my hands are getting much thinner and I've noticed today that my right little finger I can't spread out I can meet every the way but not outwards, the fatigue is horrendous and the spasms at night time in my feet and ankles are killing me and my shoulders are hurting from arms pulling down.
Can anyone else going advice on where I can go is this? Anything else to test or try? How long does it normally take before they get a definite diagnosis?