what a horror-statement! scared as hell

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what a horror-statement! scared as hell

Postby German2 on June 13th, 2014, 5:23 am

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!
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Re: what a horror-statement! scared as hell

Postby leroyb on June 13th, 2014, 5:42 am

This will be ironic coming from me but listen to your specialist not your physio/osteopath.
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Re: what a horror-statement! scared as hell

Postby Yuliasir on June 13th, 2014, 7:11 am

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...
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Re: what a horror-statement! scared as hell

Postby German2 on June 13th, 2014, 7:42 am

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..
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Re: what a horror-statement! scared as hell

Postby Yuliasir on June 13th, 2014, 8:15 am

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.
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Re: what a horror-statement! scared as hell

Postby German2 on June 13th, 2014, 8:31 am

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...
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Re: what a horror-statement! scared as hell

Postby leroyb on June 13th, 2014, 8:34 am

Other people will know more than me but I don't think so German

And this may or may not reassure you but I get burning elbow pain frequently.
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Re: what a horror-statement! scared as hell

Postby Yuliasir on June 13th, 2014, 8:42 am

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.
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Re: what a horror-statement! scared as hell

Postby Little Lost on June 13th, 2014, 8:59 am

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
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Re: what a horror-statement! scared as hell

Postby German2 on June 13th, 2014, 11:43 am

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.
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Re: what a horror-statement! scared as hell

Postby readytocheckout on June 15th, 2014, 4:50 am

German2 wrote: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.


I reached my 1 year mark in Dec 2013 and was feeling quite good, but then a couple of weeks later, BAM, along comes a swallowing problem which I've still got today. Every test I've had since Dec 2013 (NCV, EMG, CT, clinical, bloods) has resulted in being told that this isn't an MND related problem, they don't know what it is but it's not MND. I went right back down to rock bottom again when the swallowing drama happened and still haven't fully resurfaced, even since the swallowing problem I've also noticed more changes with hands and feet and strange facial feelings and even weakness in my right forearm but that one is accompanied with pain, which all just seem to be getting worse but none of which is related to MND - I'm told.

So for what's it's worth you have my best wishes that this is just another bump along a rocky road, but it's definitely not the end of the road for you or me.
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Re: what a horror-statement! scared as hell

Postby German2 on June 15th, 2014, 4:59 am

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..
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Re: what a horror-statement! scared as hell

Postby German2 on June 15th, 2014, 5:17 am

readytocheckout wrote:
I reached my 1 year mark in Dec 2013 and was feeling quite good, but then a couple of weeks later, BAM, along comes a swallowing problem which I've still got today. Every test I've had since Dec 2013 (NCV, EMG, CT, clinical, bloods) has resulted in being told that this isn't an MND related problem, they don't know what it is but it's not MND. I went right back down to rock bottom again when the swallowing drama happened and still haven't fully resurfaced, even since the swallowing problem I've also noticed more changes with hands and feet and strange facial feelings and even weakness in my right forearm but that one is accompanied with pain, which all just seem to be getting worse but none of which is related to MND - I'm told.

So for what's it's worth you have my best wishes that this is just another bump along a rocky road, but it's definitely not the end of the road for you or me.
Garry


Dear Garry,
that really doesn't sound very reassuring to me :wink: , but let me tell you that I had massive swallowing problems last summer, so that I have to see the hospital, getting an infusion because I could not eat and drink. I was croaky. Parallel I did not feel my left arm any longer, then the legs fell out of the bed without feeling it. I left muscle in my left hand so that I could not hold a book. Let me tell you. I thought my end is there. Just a few days to say goodbye..it went away. Muscle could be trained again. Swallowing problem disappeared..Never came back to this extend. There are certain theories behind: Doctors were telling me, it's all from my mind. Now that I know I have hashimoto with a tripled thyroid in size, it could have been an attack...I never learned to know what it was. Just speculations...Hope your problem goes away like mine did after a while. In my brain, I was always in another dimension to that time. And I was wrong...
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Re: what a horror-statement! scared as hell

Postby readytocheckout on June 15th, 2014, 6:29 am

readytocheckout wrote: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.


I went through the same thing, except for me it was a NEURO that told me some of my symptoms were consistent with an MND including an almost clinical weakness of my right lower leg. The leg problem has turned out to be a cartilage problem which needs an operation and still causes me the same problem. So I can relate to being told that you may have something when it turns out you don't. I also got annoyed when I was being told very early on that it could be MND, I've been scared as hell.
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Re: what a horror-statement! scared as hell

Postby leroyb on June 15th, 2014, 6:34 am

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.
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Re: what a horror-statement! scared as hell

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