Hi everyone. It took me a long time to make this account as I really felt as though I don’t belong here as I don’t “officially have MS”. That is until I saw this thread topic and it kind of slapped some sense into me!
I’ve been having symptoms of MS for over a year now in the form of numbness and weakness in various areas of my body. I am currently 5 weeks into my third relapse and this is the worst yet.
I had an MRI on my cervical spine in January this year which showed a lesion on my spinal cord in my neck. From this, I was given a diagnosis of transverse myelitis in February. The neurologist ordered some blood tests and a second MRI but this time of my brain and with contrast. The bloods were taken that day and the MRI took place in early July.
End of July I had a letter from the neurologist saying he had my MRI results and that he would be in touch to make an appt with me.
19th August my symptoms started again so I rang my GP. She told me over the phone that the results of my second MRI were visible to her and that the findings noted on the report were “conclusion - MS”.
I was told this over the phone.
I have left voicemails for the neurologist and my GP has sent at least one high priority letter. He has not responded to anything.
I’m so frustrated and upset and angry. If he knows I have MS why will he not tell me? Surely the sooner he officially diagnoses me, the sooner I can get treatment and the better the prognosis?
It’s really difficult to be supportive of the NHS when I feel like I’ve had my world ripped from under my feet with no guidance from them at all.
Sorry for the long post, I obviously needed to vent!
btw all of this is typed with my left hand as I pretty much can’t use my right arm or hand
That is awful. America’s healthcare system sucks but drs. get us our test results asap. I had results of my MRI the next day. No excuse for that kind of behavior.
Sorry to hear you are in the dreaded limbo land , it can be a very unforgiving place.
Unfortunately a diagnosis of ms can be a very slow process and sometimes takes many years.
I suspect that the neurologist might want to do further tests to be absolutely sure.
My first neurologist appointment was in March last year and i had my first infusion last week, so as you can see it can take a while.
Hopefully you will get some answers soon , try your best not to stress as this will make things much worse.
Hi. Totally relate to your post. I’ve had to go private to get a diagnosis. Ms confirmed via call 17/8. Told need to now go NHS. Steroids taken and to have follow up 3 weeks later to discuss treatments.
Just received an NHS appointment for 5th Dec!!
Completely fed up. I was told was need to start treatment asap. But guess that’s not important anymore.
I really hope you get seen and diagnosed soon.
Stay strong and keep chasing, that’s all we can do. Good luck
Thanks so much for your reply. I’m trying to just step back a bit and try not to focus on it too much. It really helps coming here and realising i’m not on my own.
Wow thats crazy! I tried to get a private appt last month but the earliest they could see me is Jan!!
I really hope you can get on some treatments soon.
