I’m at my wits end

[Stanleyleonard12]

Hi I’m 26 and was diagnosed with FND approximately 2 and a half years ago. Initially I was admitted to hospital for 6 weeks of testing. The one thing they did find was calcification in my basal ganglia(responsible for initiating movement). During that stay it was believed I had stiff person syndrome and was given one round of IVIG which has been the only drug that really seemed to work. However once that diagnosis was eliminated they refuse to even entertain the idea. I have a very complex medical history. I’ve had cancer twice, type 1 diabetes, neuropathy. Prolonged QT, hypertension, carpel tunnel and a few genetic mutations. I also have one of the Parkinson’s genes but because of my age doctors are just brushing it off. Within the first year my symptoms would really fluctuate go from not moving at all to walking with a cane. However before this diagnosis I used to walk for miles everyday. My symptoms now aren’t fluctuating and are only getting worse. I can’t speak, I can’t open my mouth or swallow properly. The drooling is continuous so I need to take marijuana as it dries out my mouth and it’s the only thing to make me hungry. I’m in incredible pain and have constant nausea. I get really bad choking fits that just seem to come on randomly. I can only shuffle sideways as my knees have locked ( I use a wheelchair) lost the ability of my right arm and all but 4 fingers. I’ve been in therapy and physio for the whole time. I’ve done speech therapy, I tried acupuncture, I tried 4 different anti-depressants none of which worked as even my therapist agrees I’m only depressed due to the symptoms. I’ve been gaslit by doctors so many times despite my medical history. Once they see FND that’s all they see. I can’t find any patterns or triggers for why the symptoms are occurring. This diagnosis is worse than all my other diagnoses combined and I’ve had stage 4 cancer. My heart goes out to all the sufferers. Any support or suggestions are welcomed.

[DNE92 Moderator FND Hope UK]

It really does feel that once they put FND in your medical records you get ignored. I was relieved initially to have a diagnosis and naively thought "oh since it's rare i will probably get good treatment". After 6 years of none and progressing to now several daily seizures and a host of other things all said to confirm it's FND I feel for your frustration. Finding out it's in the Diagnostic Manual for Mental Health doesn't help us. I know my trauma is not being converted. I do not dissociate to get away from psychological stressors- I just plain fall over whenever and lie in agony till it's over. Fully in the present although I look dead. You mentioned having genetic mutation problems. Have you had that investigated further? Channelopathy can cause periodic paralysis- and it's about a gene mutation

Won't show up on normal blood tests or MRIs. Cheers Lou

[eviedotty]

have your doctors looked at the possibility of dystonia I have lived with that for 20 plus years and for me it comes from damage to the basal ganglia. If you have severe events you could try a dose of benadryl at the start if you are in America I believe a lot of people buy the childrens benadryl from the local dollar shop and if they take it at the start it stops it going any further. I am new to the benadryl thing as I am in Scotland and been on this for 5 months now as a daily dose. The amazing thing about it is that it has unwound years...and I do mean years!...of spasm and although I am clearly still on a journey as they say I am finding that I am now having to get used to a body that feels and behaves more normally. Also due tot the severity fo how things got before I discovered benadryl I have had 2 very big bumps in the road ...first one being my spine but as my Neuro doctors didnt accept the American way I couldnt go to them so effectively had no medical supervision even thoug sine the first dose I have had 100% success with this. The second bump was more sever and involved seizure behaviour so I did ask for help. None of my specific issues were addressed at clinic level they simply set out to prove FND...moving on I myself again without medical supervision went back into my own medical history to a place were I had different doctors and I could understand what was what and i did something as simply as put myself through the mobility checks my physio did...she would do the exam..then the treatment..then repeat the exam to see the progress...to my utter shock and I do mean OMG...FFS...how can I go to a movement clinic and NOT have my movements checked! I found the problem and to cut to the bottom line NOW I find...I have an injury with a displaced vertebrae that was put back in place by a physio...I then have an MRI scan clearly showing the pinched nerves that this kind of injury can cause along with the report stating the fact of pinched nerves alongside age realted wear and tear...I have the original report from the very first physio staing the list of injuries...and so moving on I have now got what I need to keep my spine straight while I am in the wheelchair...3 years ago on top of this I had a stroke... I do the physio exercises that were given me 20 plus years ago and am swimming...but as for the professionals I have FND and am less than two weeks with this diagnosis...I feel your pain more than I can say