I am really in horror today! I visited my physio therapist/Osteopath today. I was telling him, that I have antibodies against my nerve system and so on (new findings).And then he was telling me, that my body has a lot of functional disorders, my muscle tonus were high and he has in his mind als/ms. And he would know a lot of patients developing that after a while...and maybe polineuropathie would not be my final diagnosis. You can't imagine how I feell really..I don't know how to manage the day with my kids. I am so scared...Of course I try myself to convince that als ambulance ruled als out. But maybe they can also be wrong. Like all human beeings...what a horror!
Horror: Visiting Physio Therapist
- Thread starter Deutsche
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exactly can agree with leroy.you were neurologiaclly cleared. High muscle tonus? really? Ask neurologist again for reflex tests, this is much better indication than physiotherapist\s statement. you may have just brisk reflexes due to stress, and that is all. ALS is rare disease. If your ostepat is not working in ALS center, he may have been seen few of them for about 20-30 years of operation, even good neurologists, if they do general practice, see only about a dozen for all their professional life. this is not a first time our fellows complain for improper and not ethical conduct of osteopats or physiotherpaists. Those people may have great experience with the joints and muscles but they cannot propose you neither testing nor treatment, and saying something like "I have seen that many times, you may have ms/als" is so... irresponsible, on my point of view.Some people just like to smatter, and this have no virtual explanation...
Dear Yulisair,yes, I not it is no such a reliable source. On the other hand the practicioners have a lot of experience. And my neuro has in his 25 years of experience never seen an als patient. He is ms specialist. But he told me last time I haven an extrapyramidal motoric disorder. And to my knowledge, this is also part of picture in als...And last time I had brisk reflexes. Before that they were always low. So maybe my situation went bad....I am so scared and I am afraid, there is no real help in sight...though I am so much looking for reassurance...I am so scared as hell..I don't see the light at the end of the tunnel. I cannot stand all that any longer..
extrapyramidal disorder may happen as a result of intoxication, infection etc. Some drugs can cause that (mainly antipsychotic, but several other too). If you DO NOT HAVE IT NOW (as far as I understand yours was transitional), then it is not "part of ALS". Brisk reflexes itself are nothing. They happen to all tensed and scared people.Well, up to now I am a bit lost in your possible and actual diagnoses and may confuse you with some other fellows I keep in touch (which I wouod not of course).So, as far as I remember< oyu had clean clinical from ALS ambulance, a neuro verdict about 'something affecting your muscles", another neuro saying you have (or had?) extrapyramidal disorder and an orthopedist's opinion.I assume that at least a neuro saying you have extrapyramidal disease should assign you for an EMG - was it so? I just can not remember exactly...an EMG can tell alot really, especially if you have extrapyramidal troubles.
The statement with the extrapyramidal motoric disorder is a new one. The neuro is of the opinion this is due to my psycho medicamentation. He will give me an infusion against it, thinking that this will help. Up to that I was not so much alarmed. But after today, I see it in another light. Especially that my reflexes turned form low to brisk...And of course he is not experienced with als at all. He did not tell me s.th about EMG. So maybe I should ask for that....It was last year August when I got the last one...The only light is, that als does not come with sensible problems. And I have burning nerve pain in my ellbows. I don't know whether this fits in als pattern...
oh - see, I guessed right regarding medciation-induced EPD 
)) becasue in otherwise healthy people it is one of the most common cases - intoxication. by the way it may cause high muscle tonus and brisk reflexes too. You need then talk to a doctor who prescribed you those psycho meds as generally extrapyramidal iatrogenic (medically induced) syndromes need to be resolved by change of medication. Do not quit meds by your own decision, it might be dangerous.Nope burning pain is not part of ALS. It may be part of your intoxcation syndrome or rather part of your polyneuropathy picture. Not ALS.
)) becasue in otherwise healthy people it is one of the most common cases - intoxication. by the way it may cause high muscle tonus and brisk reflexes too. You need then talk to a doctor who prescribed you those psycho meds as generally extrapyramidal iatrogenic (medically induced) syndromes need to be resolved by change of medication. Do not quit meds by your own decision, it might be dangerous.Nope burning pain is not part of ALS. It may be part of your intoxcation syndrome or rather part of your polyneuropathy picture. Not ALS.Hi,You poor soul what a crap day. I have had numerous examples of this,I have twitched for near 3 years and diagnosed with BFS for 2 .5. Been pretty careful to chose the right MND specialists and like yourself I got someone whose credentials I trusted, I.e. someone who knew their stuff. I had 3 extensive EMGs, lots of different tests such as MRIs, bloods, bla bla bla.....oh and a second opinion from an equally qualified neuromuscular specialist. Pretty well covered. I gave up my EMG addiction last September, but not my ALS fear.Despite this here are the scares other medics have given me. Here are my examples.1). A visit to an orthopaedic doctor for numb hand when sleeping, informed me that I did not have carpel tunnel or ulnar damage as my NVC done a year before hand was normal. Said it just the way I was sleeping. Consultation over, just then my hand began rippling and muscle contracting under my pinkie so I showed him it as I was putting my jacket on.........mmmmmm says he ( totally changing his tune), I think we will refer you to a neurologist, that's not good, and its hard to see if you actually have any muscle wasting non dominant hands can be slightly more fleshy, but with a history of twitching it does concern me. ( back to neurologist after 4 weeks blind panic.......nothing wrong)2) Was at ENT 2 years ago as my ears kept getting a full feeling, put scope up nose and in back of throat and said I was twitching in my soft palate. She was insistent I should go back to neurologist as it might be something sinister, had seen it before and was usually benign, but had been associated with some conditions. I asked her if she meant MND and nearly melted in my seat when she said YES that's one consideration. Died a 100 deaths that day I can tell you. Back to neurologist.....nothing wrong, 2 years on it rarely happens now.3). 11 months ago out running and foot began to slap pavement and it was hard to keep it flexed upward kept falling down, episode lasted 30mins.........ahhhhh this is it this time I convinced myself.....This was the big one I was in with the big boys now, my noose had been tied, my goose cooked, and everything was at an end...........Ran...well limped next day to physio as couldn't,t get neuro appointment until following week.........physios opinion was that it did sound like a weak TA muscle, and although I passed his strength test I most certainly needed to see a neurologist as I was twitching there Went to neurologist after 3 weeks walking on my heels strength testing.. Extensive EMG of area, nothing wrong with foot. He concluded just cramp and most people would have shaken it off and carried on running, not spent half an hour walking down a hill on heels then wondering why my TA muscle got fatigued. Never had it since and run longer and faster.My last example is to do with my oxygen levels. Asthma at night can make my levels drop and I wake up with it. My doctor sent me to resp clinic to make sure it wasn't apnea...they said I am too thin for obstructive but wanted to test for central.........aaaah panic again as central apnea is associated with ALS....'.results came back fine, but I had aged ten years with worry.I have stopped going to doctors now.The others are right listen to your neurologist, he is GRU.....and the others (physio) the minions. (Dispicable me).….PS I used to teach medical students, and we used to call then the minions.......oh no the minions are on their ward round...who let them out. .but sssshhh don't tell anyone. Take care Hx
Dear all! Thank you for your reassuring words. Maybe you all or some of you experienced similar situations. It is my fourth experience in this direction. And I was almost out of it all...I was counting the weeks, until my "mark one year" without weakness after start of fasciculations. But now I am no longer sure, whether this is a real mark. When the physio experienced that people ended up with the diagnosis after years, I cannot be sure, about anything...This fall down is the hardest one, because I was almost over it. But now don't have the power to went through this all again..I feel like in a death row...Sorry, I am so down, I cannot tell.German
Hi there,2 days later after the horrible statement of my physio t...I went through my personal hell. But now there is another feeling....I am so *beep* angry about a person without a neurological education,telling me I might have ms or als no matter what the doctors were telling me. And then leaving me alone with two kids waiting on me behind the door.I think this was so brainless and disgusting that I hardly can find any words for it. It is like someone is telling you, you probably have a brain tumor which at the moment cannot be found. And leave you standing there..and you have to drive home your kids safety.I really hope that those people are the exception (though it is not my first time, that this has happened. But the worst one). I just want to tell you this and hope most of you run into more serious people.. I will never get the sentence out of my brain...".it might develop although doctors are telling you it's not. I 've experienced that." That man has left me with no chance... This is really a vicious cicle..
I can't believe what he said you German. Totally irresponsible.To cheer you up my friend was at a physio last year who told him he to get a lump on his back checked as it might be lymphoma. he obviously ran to the Doctor who said "um..that's a cyst".Moral of the story: stick to your area of expertise.
FernFinnegan
Well-known member
German - check out Tobes story. There are a few others around here - who have mostly moved on - who have actually been diagnosed with als! Imagine. Only to find they are just fine! Search posts made by "Tobes"
Thank you all for your supporting words! Nevertheless I was too stressed to deal with the situation and went to a further neuro today. He has experience with als clients, so I could be sure, he knows the desease (my neuro has non of those clients). He said what the physio said is absolutely not true. There would be no signs of MND. Maybe it would be all due to the hashimoto, maybe due to an infection of a certain bacteria which was indeed found in my blood. To my holes and smaller thenar left, he said "it's nothing". Again, I have to start to crawl out of the deep hole in which I have been fallen, with what the physio/ostheopat said to me..
christinasgirl123
Well-known member
Increased muscle tension...lol...I don't know if you know my story, maybe you want to check out my old posts. My muscle tension as well as my reflexes were incredibly increased. Well, there's been a lot of discussions about the reasons for BFS, and I do not want to dig those out because they seem various. My story: I saw a Fibromyalgia specialist and he dxd me with an increased muscle tension and hyperreflexia and a few other things, triggered by a stress reaction to a virus and anxiety. To make it short: he cured me completely.A few days ago, in a phase of extreme stress and sleep deprivation, I cought a virus from my eldest son and had a 2 day extreme relapse. I copuld literally feel my muscles tensing up and starting to twitch, vibrate and shake like mad, and felt the pain and stiffness creeping back.I am glad this went over so quickly (I had already forgotten how BFS felt), but increased muscle tension is very likely found in anyone here. And PS: you physio is an idiot that completely lacks any sense of correctpsychologica handling of clients
Dear Chrissi,thank you for your helping words and short sum up of your symptoms. I have fasciculations now for 11 month, but my story started almost 2 years ago, with sensible sensations and twiching of my pinkies...and nerve pain..During that time my muscle behaviour changed and I also have a slightly decline of my muscles in hands and feet. They were partly reversible. But go on. A few weeks ago they've found antibodies against my nerve system. So there might be s.th. going on in my body. And I don't know how it can stop. Actually I am starting on cortisone. I've seen a few neuro muscle expert and one als expert telling me it is no neuro muscle desease. So I have to believe it is no MND. But of course anxiety is in my head. Because there IS s.th. strange going on...I am just hoping that I can believe that I'm really outdated to als...