Watch and Wait

New diagnosis and before diagnosis
1

Over the last year or so I have been visiting this site, looking for advice, relief, or just something to read that sounded like what I was going through.

I am attending the Walton Centre for my tests and such, I live in Liverpool so the journey is relatively short. It has been this way for almost a year, I saw my neurologist for the first time last September and every three months since. The first signs of potential MS happened in November 2012 when my back went. GP thought the numbness in my legs was odd so sent me for an MRI. Three MRI’s and 10 months later the Neurologist sends me for an LP which comes back as showing signs of demylination, but I have a lesion in my c5 area, nothing in the brain stem. In February this year I had what I think is my third relapse and fourth event. The second happened after ATOS forced me to go to their centre for an assessment. A few days later I could not walk and have been on crutches and in wheelchairs ever since. The second relapse happened last summer, I got Shingles as well.

Current state is; feet and much of right leg barely any feeling. Tremors are getting worse. Bowel and bladder… issues. Swallowing difficulties. Diagnosed Trigeminal neuralgia. Can’t walk without aids. Emotional… mess. And other stuff.

Oh, I got awarded PIP. Enhanced.

I just… I know I have to watch and wait. It’s just difficult.

2

Hi Claire Sounds like they are doing all the right. tests and things although admittedly the process seems sooooooo long and drawn out when you are experiencing so many symptoms and it’s really disabling/dibilitating. Are you prescribed any meds to help with the neuralgia, and tremors etc? So you haven’t a diagnosis as yet? even seeing the Neuro at three monthly increments and having had MRI’s and LP? I am not diagnosed with MS but hopefully this will bump you up on the list and somebody really knowledgable will surely give you some sound advice x Michelle x

3

Thanks for the reply, Michelle. :slight_smile:

I am on Gabapentin, high dosage I think (9 pills a day), tramadol, and a whole host of other meds to treat other symptoms. I an also diabetic.

The neurologist diagnosed CIS in December and put me on the watch list, saying I was in the high risk group of developing MS. She has told me to contact my gp if the tn pain in my face is unbearable after maxed out gabapentin, as they will admit me to hospital for… I think my gp said steroid treatment?

4

Soooo, got some updates:

  • The last MRI was clear, no lesions in my brainstem
  • My next neurology appointment is the end of October
  • At the SALT she saw nothing wrong with my swallowing, I was having a good day though, but I am not gonna “fake” symptoms. However, she gave me this powder to thicken food and drink. Also said she might need to send me for an xray for something.
  • Finally, am being referred to the Community SALT team, I guess in prep for if I get the MS diagnosis.