Hi, just after Christmas I had had enough of strange sensations and pains and decided to see a Dr, I had some blood tests, found out I was low in vit D and folic acid, began to take some supplements. A week after I developed a twitch in my right foot which throughout the night showed to my whole leg, my knee would straighten out and it was really difficult to walk. The next day I went to a and e and they admitted me, by that time my leg was violently kicking and I don’t think any one knew what to do with me. At the hospital I had a mri and eeg which came back normal, although they had to sedate me for the mri as I couldn’t keep still. I was in the hospital for two weeks and in that time different parts of me were affected, although my leg still kicked until I was asleep, the first few nights I had no sleep until they have me sleeping pills. My hands were clamped shut for a couple of days, I began to rock, my arms would move. The doctor told me there was nothing they could do for me, it was all in my head and I was done to go home, even though for the first week of been wheeled everywhere. They have me crutches and sent me home. The day I went home I was really bad, I was wheeled down and needed help walking to the car, my legs kept giving easy and going in places I hadn’t moved them to. On my discharge notes it said I had functional movement disorder. I went home, I want even able to shower on my own and as now my body jerks violently back and forth when I’m stood. Now I’m having periods where I’m having something like a seizure, I know it isn’t as I’m conscious thought but my body just goes nuts, my eyes roll, mouth drops and twitches, my neck turns to the side, very painfully! I can talk while this is happening but my speech is very slow, slurred and I will stutter a lot. Sometimes when I’m stood up my speech will be affected in this way too. The longest these episodes have lasted for is 50 minutes, leaving me tired and really hot, no surprise as its like noon stop dancing! After five weeks of being discharged I made a private appointment with a neurologist, I went to see him this Saturday. He assessed me, listened to my symptoms then had me doing different tasks. While my leg was kicking add usual he had me lift up my arm which began to tremor. He asked me to move my other non affected foot, then asked me to tap god save the queen on my thigh with my other hand. I was doing four completely different movements and only two of them was conscious. He told me it was really unusual so he’s not sure whether or not it’s fmd, some thing like touettes, (although I’m not sure on this add I don’t feel an urge to move my body just does it) or solve chemical imbalance in my brain. I didn’t know imbalances could cause movement problems like this. I’m almost wheel chair bound, I can still walk and solve days are better than others but I shake so violently and sometimes I get frozen and can’t move my legs to where they need to be. I’m getting my own wheel chair soon, the one I’m using is a borrowed one from an old lady. I have a shower chair now too. Although my house still hasn’t been assessed. Had any one else heard of anything like this? It’s affected my whole body in such a short time I can’t do anything. Oanother thong I should mention of that the constant leg kicking I can switch it to the other leg by concentrating, it’s like a electric charge and I can control to where it’s being released? I’ve just had one of those crazy episodes and feel a bit tired and fed up with what ever is wrong with my. I’d appreciate any input, thanks
To be honest, I don’t know what to say. I don’t have sufficient knowledge to help you out. You now know that it’s definitely not MS. But both the hospital and the private neurologist have suggested that it could be functional movement disorder. Or of course the private chap suggested Tourette’s.
Were you discharged by the NHS hospital? We’re they going to give you any further help? Physiotherapy perhaps? Or are there any medications which could help?
Have you talked it through with your GP?
If you’ve just been left to get on with such a disturbing condition, without proper diagnosis, treatment plans or any further assistance at all, I’d get in touch with your GP in the first place to ask for their help. You could also consider talking to PALS (the Patient Advice and Liaison Service) at your local hospital.
I do hope you get some help, it sounds like you need it.
Hi sue I was discharged out of hospital with a fmd diagnosis but I think they have me that only because the results of treats came back negative not that anything I was doing was a passive fmd sign, if that makes sense? I don’t have any medication to take it physio I am waiting to be assessed by the mental health team but it’s been so long I think I’ve given up. My gp explained what fmd was and then said to go see the private neurologist and to go see the mental health team, he also referred me to wheel chair specialist, but I don’t think he can do much more because they’re not sure it is fnd or something? I have been ringing some people today about help, although I began to tense up while I was on the phone so good job my dad was there! The private neurologist also said its something deeper than fmd, because my leg spasm never deviated even though I was doing lots of different tasks and not focused on my leg. While I was taking it should have begun to go into rhythm with my hand, if it was fmd, or I think I was told that would be the case? So he said its a involuntary movement Or a chemical imbalance, I don’t know any more I’m so confused that no one knows what’s wrong with me. It’s frustrating when my work are asking how long I’m going to be off sick and what do the drs think it is and I just have to really with don’t know. Oh well hopefully something will come up soon. I wish I had a clue about what it is I have no idea any more :s Thanks sue xx