Diagnosis help

[Jessdonna]

Hi im new here and have just been told my mri scan is clear. In my letter from my neurologist he says and also in person told me before the clear scan i have all the classic signs of fnd. All my symptoms have increased since January and are more server in such a short time frame. Im seeing my doctor tommow to see what to do next as no mention of any follow up appointments in his letter. He gave me a website to look at all about fnd. Dose this mean i have a diagnosis or would i have been told in person?

[Mic67]

Hiya, sadly nothing would surprise me. People given this diagnosis seem to be dumped by neurology as soon as they believe everything else is ruled out. If you are not sure, contact his/her secretary and tell her you are confused. If it is FND, tell them you want a referral to a specialist or physio, depending on what your symptoms are. It's the least they can bloody do!

All NHS neurologist secretary's email details should be available in the public domain.

[Jessdonna in reply to Mic67]

Thank you so much for your reply. I will do that.

[Mygeordiebud in reply to Mic67]

If you live near Bristol in the Uk ask to be referred by your GP to the Rosa Burden Center as it’s one of the neurological disorders that they specialise in.

I believe there is also a center in London that also specialise in it.

[Jessdonna in reply to Mygeordiebud]

Been to see my gp today. Yes she says you have fnd she said what do you wont from me to help you. I said at the bottom of the neurologist letter there are options. She said wait so she could read the letter then put me on antidepressants and said come back in 3 week for a 20 minute appointments so she can help. Feel completely abandoned. I said is there a specialist i can see she said he was who i saw.

[Jessdonna in reply to Jessdonna]

Was diagnosed with chronic fatigue at 32 with 2 young kids morgage relying on husbands wage. She asked what help i got back then. I said appointments to pain management. Did not go due to chronic fatigue and no one to take me.I was too fatigued to care. 3 years latter sleeping tablets and the most rest i could get from familys help i recovered enough to get back to work and lead a pretty normal life with rest when needed. This new doctor i have now due to area move as not a clue about me and seems to give me the impression unless you can see proof of illness your not ill.

[Mygeordiebud in reply to Jessdonna]

I was abandoned by my neurologist after I went I seen him privately he gave a prognosis of FND and said I may get better in the next 6 months and said there was nothing further he could do so took my money and said goodbye.

I also had an appointment with a neurologist on the NHS which luckily I hadn’t cancelled as it was 6 months after referral hence why I went private. He co firmed it was FND and told me to be referred To Rosa Burden Center in Bristol Uk by my GP.

I was also told by that neurologist that he would also sign me off his list seems to be common that once they say you have FND they back right off I believe it’s because they don’t know enough about it and easiest way is to say carry on by yourself.

I never got better only got worse my wife has progressive MS so we have to try and look after each other

Mark H..

[Jessdonna in reply to Mygeordiebud]

I am so sorry. Did you get your appointment to rosa burden centre?

[Mygeordiebud in reply to Jessdonna]

Yes I was in there for 3 weeks

[Jessdonna in reply to Mygeordiebud]

Did it help? Sorry for bugging you .

[Mygeordiebud in reply to Jessdonna]

Hi

Yes it did help

You have a number of specialists there from physio to neurologist.

Helped with FND but I also have L4 & L5 disc problems so didn’t help with that bit.

Gives you a chance to talk to other patients who suffer from FND and you realise your not on your own and can see how it affects others.

Mark H

[Jessdonna in reply to Mygeordiebud]

Thank you for this information i will ask my gp for a referral need some help feel lm missing out with quality time with my grandkids. Plus im only 46 and need to get back to work.

[Mygeordiebud in reply to Jessdonna]

I’m 55 do u live in south west

[Jessdonna in reply to Mygeordiebud]

South yorkshire. Moved last year to a little cottage in the countryside. Kids moved out doing well. Life should be great. It was till this started just before Christmas. So i know for a fact this is not in my head or depressed.

[Mygeordiebud in reply to Jessdonna]

Don’t think they cover that far

Best just to get phone number and give them a ring really friendly there

[Mygeordiebud in reply to Mygeordiebud]

Mine started last August after I had spinal surgery and was told symptoms should get better in next 12 months but hasn’t and has slowly got worse.

I live to Taunton Somerset

[Mygeordiebud in reply to Mygeordiebud]

Rosa Burden tel no: 01174140451

[Jessdonna in reply to Mygeordiebud]

Thank you very much. I think i have had this since i was 32 mis diagnosed with chronic fatigue. When i look back over the years i have done well but had relapse after relapse. Once my eyes would not stop moving once had my right leg would collapse by time my hospical appointment came it had sorted its self. Always used my holidays from work to cover my sickness. Worked in a family business so could rest more.

[Mygeordiebud in reply to Jessdonna]

Mine started with not being able to lift my left leg when laying flat then moved to my right leg then both arms I can wake up paralysed in both legs and arms just have to relax and wait for it to pass.

Lost feeling in front of left leg and now cannot lift legs in a multiple Of positions suffer from tremors and memory loss and also fatigue can sleep for 23hrs left with what I call a fuzzy head unable to recall words.

Get severe shaking of arms or legs which I cannot control.

[Jessdonna in reply to Mygeordiebud]

I am so sorry. I am not as bad. I dont sleep with out a tablet. Maybe get from 3 to 5 hours a night. Brain fog fatigue bladder problems right leg collapse then limping dragging along. Twitches knumb back of my head and right arm. Itching headache vertigo and feel detached from life. Voice volume just gose. I forget have memory problems. Talking some times is not worth doing due too not being able to find words. Cant always read or follow a film.

[Mygeordiebud in reply to Jessdonna]

Yeah I cannot read as I forget what I’ve read I can watch a programme and the next day watch it again really weird.

I get severe uncontrollable shaking in legs or arms. Leg gives way or just feel dizzy and and cannot balance and just fall over.

[Jessdonna in reply to Mygeordiebud]

I have trouble with eating some times. I foget how to swallow and when chewing catching my breath. Its as if i can only do 1 thing at a time.

[Mygeordiebud in reply to Jessdonna]

I thought that only us men had that problem

[Mygeordiebud in reply to Mygeordiebud]

Doing one thing at a time

[Mic67 in reply to Mygeordiebud]

Mygeordiebud, I have the leg thing too! So bizarre isnt it. Mine wont lift when theyre straight, but when I bend them i can lift them.

[Mygeordiebud in reply to Mic67]

Yep also if I am sitting I cannot lift either knee up. It’s when I wake up paralysed on all 4 limbs when I get worried as I have read on here someone had the same but never got the movement back. I would definitely find that very hard to live with.

Used to just get the paralysis with no pain but now on my arms when they start to come back the Elbow pain is through the roof but have to keep going until I get some movement back.

Mark H...