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Support, help, advice & information for Multiple Sclerosis. Ask questions & share experiences with people affected by MS.


1 week since diagnosis

Posted by carolmac57 , 27 June 2013 · 815 views

Hello to everyone. I am very new to this. Don't quite no how to work things here but I'll give it a try. It's one week since I was told I had Secondary progressive MS. I have been to doctors periodically, though I am certainly not one to hound them. I go and explain my symptoms, and they do lots of blood tests. They always come back normal and I'm left feeling like a time waster. I can go back at least 20 yrs when I first felt my feet were going numb. It so happens at that time I had also trouble with my back. My doctor did send me for an MRI scan then, but it was only concentrated on my lower back. So no abnormality was spotted then. Then I started to feel exhausted all the time. So back I go to the doctors. I got a new doctor this time. She commented on my balance and asked me if I drank a lot. Just days earlier someone had asked me if I had a liquid lunch. I must confess I burst into tears and told the doctor I feel as though I'm drunk all the time. So she checked my balance and wasn't very impressed with it, and looking at my notes said I think it's time you have an MRI scan. So 100mile journey to Glasgow to get an MRI scan. nearest place for me. About 8 weeks later I got a phone call back saying it looked as if I had MS. So another 100mile trip to Glasgow to see the specialist who asked me to go back and have a lumbar puncture done. So six weeks later I had to go for the lumbar puncture. Another 100mile trip. Then I had to go for the results. You've guessed it. Another 100mile trip. The specialist said it was positive for MS, but I had gone through the relapsing/remitting stage undiagnosed, and was now into the secondary progressive stage. I'm still waiting for an appointment to see an Ms nurse. I just hope it won't be in Glasgow. That journey is so exhausting. Does everyone have this trouble getting diagnosed? I don't know what should happen next. I'm just at a loss just now.

Hi carolmac 57

first of all welcome to the forum

I have a similar story to yours , i was keep getting referred to  reumatoligist and over the years i just gave up on seeing my GP as
it didn't matter what strange things were happening to me , it was all put down to the same old problem !!!
it was only by  seeing a fresh out of med school GP  "could see her next day for a medication revue " well anyhow i told her about some of my symptoms and she she referred me  for MRI  ,and of course the scan showed up my MS lesions .

I seen my MS nurse for the first time today "hope you see one quicker than i did"
she was really nice and the meeting was  loads more productive than i thought it would have been  and now feel much better within myself .

hopefully you will get to see your nurse and MS specialist really quickly !
if you read the forum you will see loads  of long journeys of diagnoses  and dont go thinking because you have "Secondary progressive MS" that there in not a lot they can do for you , there are plenty people here in the same  boat as you that will be along to tell you more !

thats enough of me rambling , hope you get sorted out with a nurse very soon  and start feeling better .

Mal x
Hello Carol,

Welcome from me as well.  Your story is so typical of many.  MS is often a very misunderstood condition by most GP's.

You may find that posting this entry in the forum, under either 'introduce yourself' or 'general discussion' topics more helpful.  

Most members here, use the forum but not all use the blog area.

If you get stuck, give me a shout and I will help you post in the forum rather than the blog area?


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