My fnd

[debbielynch123]

I had this since November last year can I just say more need to go in to the docters and nurse who treat you and more support from the start not be told and then leave without. support

[giltnane]

I totally agree, GP's don't understand there isn't enough professionals that understand or believe in the condition. within the community doesn't have barely any support makes you feel insure in your ability to received the correct treatment to physio, medications etc, makes you feel that you are in permanent limbo .

[Tilly64]

I totally agree with you. I've been going from one neurologist to the next to keep being told I have FND, the progressive myelopathy, then now medically unexplained/FND. This is in the space of six years now. All my symptoms mimic MS. Got told the other day I've had it so long now that it won't get better but still no support is given and no further appointments. I think we are just being put on a shelf out of the way until they decide it actually is something.

[Bfb65]

I fully agree with what you say, my husband has had his symptoms for nearly four years after suffering from pneumonia and then a mini stroke, all his symptoms mimic ms. He saw a neurologist in Sheffield who said all they could do was send him to psychotherapy but the psychotherapist who previously assessed my husband for stress said no appointment would be given as he does not fit the criteria for psychotherapy, so we are now left on our own with no support or appointments. Luckily our Gp is very good and doesn't accept the fnd diagnosis, saying he thinks it's ms. At present we are waiting for my husband to have a stomach peg fitted to help with feeding, we have given up hope of getting a proper diagnosis from consultants as they don't seem to care.

[cgarff]

I think we all feel the same way, docs cant find anything, that is if they look, so we are thrown under the end umbrella, which just tells the next doc to pass it off as well. I just can't get it out of my head that it's not just in my head, there are too many of us out there to ignore it. I personally just wish that someone would take the time to actually look at this and not just pass it off like everyone else. Just because you can't understand it doesn't mean that there isn't something out there to help. We are just as important as ms and Parkinson's etc.. Patients. We matter too. We are hurting in so many ways and just pushing us aside isn't helping at all.

[kmvalade]

I agree. I just went through MRI's of my brain, back, neck and had a spinal tap, blood work to determine MS because all my symptoms mimic it. My bladder has stopped working twice now. I've been on a catheter since July as I am afraid to have it out and wait and see when it happens again. My urologist is testing me for cancer before he puts in a supra pubic catheter. I was in the ER a couple nights ago because after 6 hours there was no urine in my catheter (and I was drinking plenty of tea). I called my after hours urologist and he played it off. I did what he said, still no urine so I went to the ER. Doctor's irritate me so much. They think they can just tell you whatever and that we will just blindly accept it. Well I've researched every type of test I've had and when the doc told me my WBC was normal (which is hasn't been in a year) I challenged him to show me. It was elevated. I hope he felt stupid. They then said I had a UTI and put me on antibiotics. The next day my urologist said to not take the antibiotics as false negatives alway show a UTI when you have a catheter in. But NO ONE could tell me why my kidney's stopped producing urine for at least 12 hours. When I pushed my urologist he just said that's something we'll never know the answer to. What????

Anyway, my MS came back negative with an "isn't that great!" I said yah but now we have to do more tests to see why I have all these symptoms. My gait is off, I trip and fall, dizzy, numbness and tingling always on feet and fingers, occasionally on my face, pain in my neck and shoulders, low back spasms, restless leg syndrome of my whole body (horrible), bladder and bowel issues, eye sensitivity, lesions in the brain,nodules in my lungs, the list goes on and on. Plus I have a brain injury (cognitive impaired) so I am hypervigilant about researching everything (which I don't know that it's healthy but it sure has shown me that doctors don't have the answers or problem with making something up thinking most people are ignorant of all things medical.) I'm going to a very well known neurologist and I meet with her next week to see where we go from here. I wonder if these doctors who pass out false information have ever experienced any of the symptoms we've had to deal with. To be dismissive is an insult.

Sorry for the long rant...it's been building. I wish all of you a very heartfelt hug and hope that your experience comes to a resolution that makes sense.

[debbielynch123]

Hi all thank you for all your comments on my post I like to let u all know I back at work get my life back