What do I do now ?

New diagnosis and before diagnosis
1

Hi all I made a post around July/August time last year about the symptoms I was getting.

  • Pins and needles / tingling/ crawling all over body including the face
  • random attacks of fatigue.

I had lots of blood tests everything was fine back the forth with the doctor I was finally ref to a specialist which was in the Musculoskeletal department . Also during this time I was taking Amitriptyline which seemed to ease the effects of the tingling but the medication was making me feel complete utter crap so I stop taking it.

At my appointment I was tested with all my reflexes and functions she didn’t seem like there was anything she could do and discussed my case with other specialists. I was finally ref to a neurologist.

During my time waiting for this appointment my symptoms where still there and trying a lot of different medications for the pins and needles didn’t work and to this point still hasn’t.

I went to my appointment I was so sure this time round I will get answers. All the neurologist done was the same exact tests as the previous person. No mri or nerve conduction studies. She sent for my B12 and calcium bloods. All came back fine with a letter stating she thinks my condition is something called FND Functional neurological disorder and medications to try. Feel free to read up but very similar symptoms to many things including MS . And after all that I thought is that it ? I’m been off sick from work as the pain I get from the pins and needles are so bad sometimes. Been back and forth getting sick notes and changing meds to see if it helps my symptoms and still nothing yet.

Im at the point now my doctor seem reluctant to give me a sick note last month and suggested try going back to work to distract you ? Like I’m dealing with something here that can’t be seen I’m in pain I feel like crap and I seem to be invisible and I have enough distractions at home with 2 kids and 3 dogs lol.

Im lost what to say or do next the doctor says I’m diagnosed I don’t need anymore tests? Can I even request to see another neurologist? Can I have a mri? I really would love some input from anyone experiencing this I feel quite lonely with this I haven’t got a lot of friends to talk to just any suggestions if I should take this issue further or not ? Thanks

2

Hi Ken - I have had a similar experience. My first trip to a Neurologist was nearly 30 years ago, he did a few simple stand on one leg touch your nose type of tests and declared I can’t find anything wrong with you.

30 years and many, many, many symptoms later when I could bear it no longer I was back in front of another Neurologist who conducted similar physical tests, said I think you’re probably fine but we’ll do an MRI just in case. Two lots of MRI’s later one with contrast Primary Progressive MS was diagnosed - this was a private appointment. The subsequent NHS appointment brought me back to the beginning almost - I had to encourage the guy to check the computer and actually look at the scans…‘hhmmm yes…I see…’.he said…‘tell you what, go and have a Lumbar Puncture and more blood tests etc…I think it is Secondary and not Primary and there are a lot of sick people out there you know, don’t get too hung up on labels and names for things…people get too hung up on names for stuff wrong with them…blah blah blah…’

Well after 30 years of pain and all the rest of it I just ignored the guy - I did have the lumbar puncture and I have chased them for the results which I am hoping to get in the post soon…but the sad case is that even after all these flipping comings and goings, to-ing and fro-ings I STILL don’t QUITE have a DEFINITE answer. Please excuse the capital letters they are there just to impart the sense of frustration. Oh, and to cap it all I am also under the Royal Orthopeadic Hospital in Birmingham where I am due to have several operations which have now been put on hold awaiting The Outcome.

Wishing you all the best on your journey :slight_smile:

3

By the way - yes you can request a second opinion, and definitely ask for an MRI…

4

I really appreciate your input and advice. I hope you get your results to. Reading a lot of people’s stories it seems to be a lot of chasing up and been persistent. Just a shame it takes so long with the NHS.