Hello all, my gp referred me to neurology in October after I had a bit of a rant about having 101 symptoms over the years so obscure I had been reluctant to report most of them. Luckily I didn’t have to wait very long and the consultant suggested an MRI of my head which I had in November. A couple of weeks later I received an appointment letter to return in December for a further MRI of my neck and a lumbar puncture, nobody told me why I was having it or when I would hear the results so before I had the LP I told the Doctor I wasn’t having it until someone told my why, he went to see what he could find out and said that my MRI showed signs of several strokes and demyelination of the spinal cord so I had the LP and went home. I rang up last week and the consultant called me back and said that my lp was normal and he would send me an appointment to go for another MRI to see if there are any changes and now I’ve received an appointment today for the 8th of Feb.
I’m wondering if anyone else has been in the situation of not having a clue what is going on? That 2 minute conversation when I went for the lp and the 3 minute phone call with the consultant last week are the only indications I have had that ms is suspected, shouldn’t my GP be contacting me? I am not a crazy worrier but the frustration for me is that due to circumstances I’ve not worked for 2 years and now I am stuck in this void not knowing anything, I am not on any medication either, the fatigue is so debilitating I worry If I get a job I might not cope then I’ll be in turmoil again financially, not sure I can go through the hell of coming off benefits then trying to get back on them.
Thanks for reading, I hope everyone is as well as they can be.
Katrina.
Hi Katrina, I think best thing would be is to have the tests, see what the results are and then think about your possible return to work.
Are you hoping to get a new job? Are you benefits due to run out?
Your capability to work will affect your benefits, I expect.
Hang on in there chuck!
Pollsx
Hi Polls, thanks for your reply. I gave up work to move to England in October 2014, things didn’t work out and I came home between Christmas and New year, it was a very stressful time for me which probably helped me on my way to where I am now, I got a frozen shoulder and I’ve been attending dermatology for a lupus type skin condition, I discovered I have b12 problems and vitamin D too since sunlight is not very nice to me. I was all excited mid 2015 when I was to start on medication for the skin thing but I took a reaction to it and had to quit 
I thought I would be feeling better by Christmas and planned to go look for work then I saw the Neurologist and feel I’m back to square one. I was so ill with depression I wasnt capable of applying for PIP so I’ve been living on ESA alone thinking all the time soon I’ll be well enough to work! it’s so frustrating. I had an MRI on my shoulder along with my first head scan and have an appointment next week to hear the results of that and Im seeing Dermatology at the end of the month too because they don’t know what to do next about my skin…it’s just one thing after another.
I know I am extremely lucky compared to the majority of people who are really suffering and we all wish we could do more, I’ll accept if I have to wait a bit longer to think about working but friends and family who don’t live with me (and only see me when I’m feeling good enough to go outside) don’t believe there is a thing wrong with me.
I’m thinking I’ll make an appointment with my GP and talk it over with her and try and get some info from the Orthopedic consultant next week.
Sorry for the story book! things get increasingly difficult to explain.
Katrina
S’ok hun. My story’s complicated too.
Are you UK.? Can’t tell for sure, with you mentioning moving.
If so and you think you could be entitled to PIP,
, you can get help from bodies like CAB to help fill it in.
Pollsx
Yes, I’m ok thanks, I moved from Scotland to England then back again, I was sorted with a house by July but my health had already taken a big knock by then. Strangely I woke up one day about 4 months ago and I didn’t feel depressed any more! so although I’m in quite good spirits I’d feel a lot better if the Doctors were talking to me, it’s all very frustrating, I’ve not even sat down and given a health history.
I was told to apply for PIP at the start and I’ve been to CAB, my housing office have offered me a social worker to help too but I wanted to get the scan out of the way first and though nothing would come of it. I’d rather get something off the GP to help with the fatigue and things and look for a job but I know that might not be possible with all the hospital appointments etc.
Hope you’re having a nice weekend, thanks again 
Katrina