I am slowly becoming like an ALS patient...
I wonder, does anyone have slowly and... - Functional Neurol...
I wonder, does anyone have slowly and steadily (over years) progressing muscle weakness in the whole body (no other symptoms)?
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kotovasv
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Yes, mainly my thing, though with some loss of feeling (or being unable to decode what I am feeling). slowly progressing up body, exteral and internal, later following behind. took about 6-7 years to start into my hands. Now affects bladder, guts and breathing (last years 'present'). More of a battle to be in an 'up' frame of mind, but still get there.
had a weird one last year, I wonder if any one else has had, spinal stop working mid-surgery. Evidendly in frequent side effect of neuro problems. Fortunately the anethetist saw me as that and was prepared just in case (drug alleries meant thinking well and truely ahead). So ready for it. Was one interesting experiance, and yes I can be a bit weird. As much noticing all going on around me as being aware of pain. One bonus of living with pain. And face it only lasted a few minutes. But is another peice in it being neuro.
Yes, I also have atrophy in some muscle groups so please do not feel alone 
Thank you so much for answering, I was feeling like an alien. I have this stuff for already 8 years. It all began after a flu, first my muscles started becoming really fatigued after any more or less long effort. I also developed an eye strain and finally double vision. In the first several years, I had periods of worsening and remissions, but about 3 years ago, I started getting permanent muscle weakness. First in the proximal muscles, then it spread down to my wrists and feet, too. Since then, the weakness steadily grows worse, recently I got it in my back to the point where I can not straighten it at all on my own, without support. Now I cannot make a step without a walker, and after a short distance I have to be wheeled on this walker. Doctors are absolutely ignorant and even do not admit I have muscle weakness, even though I have it in every movement, not only walking. Fortunately, I have found myself that the drugs used in the treatment of myasthenia help me a lot, boosting my muscle strength for 5 hours, so I can walk short distances with a cane and drive somehow a 2 mile distance to my workplace. Not only can not I get any interest from doctors (except for "go see a psychiatrist"), I can not get any disability, too. I do not have even a handicapped parking, as nobody is taking me seriously (psychiatrists, too, by the way). I wonder, do my symptoms look like yours, and do you get the same attitude from doctors?
Hi kotovasv I too have muscle weakness. For years I complained about left sided weakness in particular. I would drop things from my hands and now there does not pass a day that I don't drop something. I had such high hopes when I went to therapy that I would be better than I am. I understand that it's important to keep using my muscles as they do become weaker with inactivity however these last few months I have began to use my wheelchair in the house more due to back pain and leg weakness. I told my neuro consultant this and he went and discharged me! His attitude had progressed from caring to insulting(his face down into mine saying loudly, "It's trauma!" To indifference and strangely the last appointment very quietly saying that it was FND! Going to make a appointment next week with one of the gps and see if she has received a letter from him.
Hi Kotovasv, I have a right hand sided paralysis (weakness). I've only been suffering this since May last year and dispite my neurologist saying that he hoped it would disappear by itself, otherwise i would just have to live with it. Im just learning to live with it. Here in Denmark when the neurologist says they cant do anything so the only other thing is Psykiatrics.
I have been to fysiotherapy where they have tried to build my muscles and stamina using fitness machines. however I found that some days i could, somedays I couldn't. I have now found at fitness method which seems to benefit me, by Building my core muscles and then working on different musclegroups on different days instead of all musclegroups on the same dag. After 50 minutes I am very tired and my left hand side gets very limp, however I find that it helps.
At present i have just had a Whole month where i have walked without my left leg limping or trailing behind me. Although my other syptoms have been there all the time. I have problems with my right arm, I have my own buisiness, giving practical help and care to the elderly. Sometimes i can do less than they can, have to smile. A little job of cleaning a window can both be painful and take an age as I get slower and slower because of the weakness. At present I Work 10 hours a week and its more than enough. I also drop things and my muscles are vey tight in my arm, left hand side of my neck and left foot, My right shoulder is lower tthan my left. These things i can cope with, what I find really hard is the totally fatigued/foggy feeling in my head, Im constantly tired, even though when i do get to sleep i sleep heavy. Mornings can be hard trying to get op/wake up. And the tingling in my face, right arm and right thigh, No-one can see this, it's there all the time and as of yet has not disappeared at any time, sometimes its less sometimes its more. What I have found is that the more i ACCEPT this is how it is, the easier it is to deal with.
At present i can't do anythig to change whats happening i can just learn to adapt. Mindfulness has helped med when things are reallybad, by making me fokus on otherthings and accepting the way my body feels from day to day.
Ive have just been given an appointment to enter some clinical trials, as their is no form of treatment or acknowledge diagnosis in Denmark, I feel that its the only option I have. Its run by research Group headed up by a leading psychiatrist (Sorry brain is out so can't spell). i think/feel its hard to accpet that fnd comes under the heading of psychiatry, but its only a NAME. If they can find something that can help, then role it on. There are alot of answers from psychiatrist that I dont agree with but honestly at least its a research team WHO are interested in my illness.
Hope you know your not alone and keep going and hopefully one day our illnesses will be recognised and we´will get the help and benefits needed.
Thanks a lot for your reply. Same thing here in Russia - either you have an identifiable neurological disease, or go see a psychiatrist (who, in turn, is as interested in you as a stone wall). I tried antidepressants and physotherapy just for the heck of it, it was a great waste of time and money. I have been living with this illness for almost 10 years now, it is slowly progressing, no remissions whatsoever.
This tired and foggy sounds a bit familar, has anyone checked you out for sleep apnoea? (Where you stop breathing for short periods in you sleep). Cause of breathing problems this got checked out. turns out I have it despite weight not being the cause. Now looking at the neuro side being the cause and will being trying maching to aid my breathing at night in another week. They hope it will kick start my intercostal muscles (ones along ribs) to work. Also will find out if throat is closing on me by reacroding machine takes.
if I can manage to live with the noise and 'discomfort' of the machine forcing air into my lungs this should up deal with low oxogen level in my blood, poor quality sleep, morning headaches, foggy feeling, and at least the section of my tiredness that is not due to constant pain.
I've found getting reffered to other consultants than neuro and psych has helped me a lot, and this has take a 15 plus years. They are finding neurological results to tests to lungs and bladder.
Plus a referral to a neuro physiotherypist has resulted in exercises that help me regain bits of ground, some 2 years later I am still holding. For example, started seeing her right when started getting dystonia and she helped me 'work' it out. Doubt it would have been possible a bit further down the line. But I know how I can deal with it each time it shows up. When it comes to increasing loss of function, 'all' she can do is help me slow the pace. And in the process identify the best exercises to help me gain back some of the ground I've lost.
I recently manage to mutually agree to stop seeing the psychiatrist. I dealt with the childhood damamge they are so keen on. The part I had avoided cause that place was so dark. She saw my decent, and my more than return. Discharged me. Will be interesting to see what happens when I see neurologist as, in Leeds (United Kingdom) when diagnosed with FND you get both. Ahh, FND is truly ongoing case of watching life's own play being write by others with thier locked in notions. Thought when child abuse came out of the closet all this had ended, but not with this diagnosis. Irony.
Yes I also have muscle weakness. I am told that it is caused by my conversion disorder which i am trying to learn more about because I was just diagnosed with it in May.
Yes, I am so much worse in the past 8 month than before. The same as you are describing. Just had over a month of basically lying in bed, sleeping, reading and resting. Culminated with a drs visit, two ER trips and then send home( I was still breathing) in not so great condition. Drs concerned about a possible Myasthenia Gravis crisis. Recent Single Fiber EMG eliminated MG, but neurologist is still prescribing Mestion, medication for MG. Helps a bit, not as much as in the beginning. Also have many other symptoms; muscle atrophy, weakness, right-sided leg/foot drag, double vision, drooling, choking on food/water, increased pain as this has progressed, muscle spasms, stiffness in muscles and more.... which makes life miserable for me.
Absolutely!
I swore up and down it was ALS when they first started, but it's been in my body for 12 years and up until now, the only part of my body that saw significant progression was my left arm, even though I have symptoms from everywhere from my feet to my face. They started with a weakness in my left arm that went to my left leg and then my right arm and then my right leg and then the rest of my body all throughout the course of a month or two. I'm scared of ALS because I'm getting worse but everyone keeps telling me this is NOT how ALS progresses or presents. Need to see a neuro but it's gonna take a while. GP told me she thought it was "somatic" back then, which I assume means FND. I don't know, it's a lot.
