gorge spasm - again...

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gorge spasm - again...

Postby German2 on June 27th, 2015, 3:09 am

Hi there,

beside my very painfull lower arm muscle waisting I now have gorge spasms - very extreme ones.
I had that 2 years ago for a while. Now it is there again. I do not see any sense in going to the ER. I know they won't help.
Yesterday it happened in a situation of extreme stress. I was in a neuro office for my dad and telling the office lady about it. She said " we have those reactions in patients with MS"...

I know it also happens in ALS. So I have high muscle tone (hurting very much meanwhile), muscle wasting in both lower arms with much pain, neck and shoulder pain and those gorge spasms.
Almost no twitching. Otherwise the picture would be perfect...Beside the fact, that it is not my first period with those spasms..

Any thoughts? Of course I am very very depressed. Just focussing on the holiday with my kids, which I am afraid could be the last one....
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Re: gorge spasm - again...

Postby German2 on July 9th, 2015, 2:14 pm

I saw so many doctors the last weeks and I am so bored. Meanwhile my lower arms are so painfull (from ellbows over the lower arms into the fingers the pain goes symmetrically on both sides), that I have to put a pain cream onto it....
I am tested for lyme (westernblot): negative (test on bartonellose is still running)
I was in a center for rare desease specialised on Ehlers-Danlos-Syndrom. Drove 4,5 hours there and back. Just 4-5 minutes at doctor's office (a dermatologist) telling me that I might have a minor ehlers-danlos but my problems would be obviously neurological, for my atrophied arm muscles. He refferred me to the neuro...There I go.

I was in another center for rare desease today. In that case it was a neurologist who gave me the exam. She was just interested in the fact that I might have an ehlers-Danlos and thinks it would be quite probable, that my problems derive from that and my obvious hypermobility.....
She did not even commented my obviously very different reflexes in my two legs which I had today...one leg was quite jumpy, the other stayed flat....She thinks my arm muscles are so flabby because of ehlers-danlos....She was not willing to give me a thorough investigation, because the last one was just three month ago.

What do you think about the total different reflexes? Should I insist and write an email to request what she thinks about it? She told me explicitely that it can neither be als nor ms due to the symptoms. But I am not sure about the latter. I have skin burning, strong numbness sometimes, stabbing pain, ...but in the end I am quite sure it is s.th. inflammatory.

Some doctors recommended me to try cortisone. I have some TRIAM infusions here. But I did not give it a try....The neuro from today, she said I should not take cortisone. That would harm me even more...She gave me a receipe about baclofen.

I am so confused about that all, that I really have a big meltdown...
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Re: gorge spasm - again...

Postby Yuliasir on July 9th, 2015, 11:20 pm

German,
as far as I can see, both neuro and EDS specialst literally told you that you are not their patient but have something else.

As per desription, you have typical neurogenic pain, which means pain without actual cause or with a certain 'gap' between cause and pain. You may try baclofen of course but neurogenic pain has usually nothing with acute pain at inflammation, so usualy anti-inflammarory analgetics are useless (you will wonder but sometimes even opioids are useless). My granny had 20 years of such paind in the gut and he could get relief only from some peculair combination of drugs, abd not for long.

This pain might have nothing with MS (and of course with ALS - becasue despite on your reports of high muscle tone, seems like none of your neuros do not suspect upper motor neuron damage in you, which could cause constant tonic seizure with extreme pains and loss of mobility of your hands, etc.). As for different reflexes, you may ask the doctor of course but please consider that you may have perception bias, and unless the doctor is a complete idiot, she should note that in your report, if she would decide it is clinically significant).

SO, becasue you are still able to drive 9 hours, and your hands and legs are doing what they have to do, maybe your main problem is pain? Do you have pain clinic somwhere around? At least people in pain clinic would deal exactly with what really eats you - and they know how to test the ways pain spreads in the body, and they know a lot on how to kill the pain or stop it or even heal it - and they are also a specialists in neurogenic pains which are really very hard to treat.
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Re: gorge spasm - again...

Postby German2 on July 10th, 2015, 12:28 am

Dear Yuliasir,

maybe I told it in a bit complicated way (I have concentration probs meanwhile). The neuro really expected me to have Ehlers-Danlos and thinks the problems derive from that. The EDS specialist does not. That makes it so complicated.
The way you describe the upper motor neuron damage is fitting so well on my symptoms. But the neuros are really still convinced from another reason. External reasons for high tone...Or they are playing the waiting game...

I asked them about brain and spine and they told me one should have seen in the MRI (3/15) or lumbar punction (2012!!). I am not convinced. They are waiting on paresis. But my progression is very slow...The only reason which keeps me from thinking its MND is, the numb feeling I get from time to time, very strong. I happened that the massage lady touched my right foot and I did not feel it. Like it did before during the osthepathie session...

What the pain clinic is concerned I was there for three weeks not long ago. But they could not help me that much. Of course they recommended me to take Pregabaline. I have it here...But my neuro did recommend not to take it for certain reasons..I have it standby..
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Re: gorge spasm - again...

Postby German2 on July 10th, 2015, 1:09 am

...maybe it can take a long time, for the full picture of the desease creeps in? Just showing upper motor neuron signs at the beginning (though with the twitching I do also have lower signs).
My hands have got indeed stiff. And I told the neuro..
Would the Upper Motor neuron syndrom show up in the clinical?

Thanks!!
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Re: gorge spasm - again...

Postby Yuliasir on July 10th, 2015, 2:31 am

Well, I do not think it would take more than few months before upper motor neuron dergadation becomes obvious not only for patient but for doctors as well. And I track your posts here and I see you suffer a lot but still do not come back with a diagnosis you fear so much (unlike prattstar, who was diagnosed in 1 year, or physerv, for whom period from veird issues to ALS diagosis took about the same time (9 months I think). SO I really think you should not expect at least ALS diagnosis considering length of your symptomes and lack of practical deficites (I mean apraxias, when a person tries to perform a muscular action but fails, like phserv described - he tried to blow the air from the mouth but got a complete closure of the mouth and air was going through the nose instead, or he could not took a high note despite he was a singer for a many years). No failure to perform an action - no practical deficite, just so.

Upper motor neurons regulate our muscle tone and take part in our reflex arcs. Due to their action we have compernsated muscle tone and could move our limbs etc. Deterioration of UMN (motor cortex) has many clinical signs evident to the doctors, among them reflex changes, muscular pains (due to tonic, or constant seizures) and contractures (specific position of limbs caused by increased muscle tonus and disruption of reflex arcs).

Having stiffnes and neurogenic pains IS NOT THE SAME as having true UMN signs (muscular pains and contractures), and unless your neuro doctor is not a complete zero, he or she should note such changes (becasue all neuros receive training on live victims of stroke (also causing UMN damage), and some of them on ALS, MS and other diseases whihc affects motor cortex) so they KNOW BY EXPERIENCE how UMN damage is seen (as well as LMN, of course).
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Re: gorge spasm - again...

Postby German2 on July 10th, 2015, 10:42 am

it is so good, to read your comments Yuliasir...The Neuro she is a neuromuscular expert at University. She leads certain projects and motorneuron desease belongs to the spectrum of her department. So I should be sure, there was no such signt. But what causes the *beep* muscle wasting at lower arms, the loosing power in the arms and the pain (ellbow pain, neuropathic AND muscle pain)...and of course I am afraid when I hit my foot against the stair...It happened two times the last days...Yes, I know it is three years of symptoms now is definitely not standard. We have a new young victim here in a bigger city in Germany who got famous with the desease because he is just 35 but a ballet dancer at opera and therefore belongs to the risk group. He has a very fast progression. But in the end - as another neuro said - you have something very slowly progressing and we do not know what and maybe will never know. So you have to live with thtat...That is something I am not able to...I have read the long post of physerv..I was so sad. He had the day before responded to my post and we had a small conversation. But he did not mention what he revealed one day later..Very very sad. Thank god, I still can whistle. But gorge spasm is also not fun, I swear.
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Re: gorge spasm - again...

Postby Yuliasir on July 10th, 2015, 2:39 pm

well, something slowly progressing might be a kind of Isaac disease which unfortunately leads to disability (wheelcahir) but does not kill. Raindog has something like that (and constant pain in the both legs, very strong. he uses medical marijuana against it). ALS kills and grips quite quickly as you can see.By the way he has no deep tendon reflexes on both of his legs, but still walks, as far as I understand.
You may talk to him maybe, probably you share the same condition.
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Re: gorge spasm - again...

Postby leroyb on July 10th, 2015, 3:15 pm

I have many of your symptoms German and I am 21 months in now. Particularly the neuropathic and muscle pain my elbows. Still no deficit. Ever get the feeling like you have whacked your funny bone? I get that sometimes for HOURS at a time.
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Re: gorge spasm - again...

Postby German2 on July 10th, 2015, 11:25 pm

My funny bone often hurts...But it is more like a stabbing pain into it or burning pain. It is on both side. My actual pain has similarity with the so called "tennis or golfer ellbow" I guess. But it is on both sides. And I do think it comes from muscular disbalances..

My most worriing is the muscle decline, which always comes in kind of batches. First it was my hands, then lower legs, and now arms. I have to fight to keep my strength. but now with the arms, it seems not to work, to retrain them. It hurts too much after the exercises, but I use pain creme...

As long as I don't have a fixed diagnosis, my ALS fear will never die...I read from cases who are diagnosed after three or more years of symptoms. I know such a case personally. But I will do a muscle biopsy soon. I will fix that on tuesday with my neurosurgeon who agreed on that...maybe I do know more after this..

By the way: Do you also know gorge spasms? Is there anyone here sharing this condition?
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Re: gorge spasm - again...

Postby German2 on July 11th, 2015, 4:55 am

Another question that I ask you and myself: Why did they prescribe me Baclofen, a medication against central nervous system damages, f.ex. in MS, when they do not think that it comes from my central nervous system....I cannot trust the German doctors any longer. I think I wrote this any longer. They are not interested in helping, but just to prescribe you some medication..no matter what...

Any comments on this are welcome...
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Re: gorge spasm - again...

Postby leroyb on July 11th, 2015, 5:03 am

Not sure what gorge spasms are? i'll guess it's swallowing trouble?

A muscle biopsy should give you some answers, I am thinking of getting the same.
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Re: gorge spasm - again...

Postby German2 on July 11th, 2015, 5:47 am

something like that. It is like a cramp in the throat....But it is not the first time I have that. I had those troubles 3 years ago already...And since 2 years I have suche a diffuse muscle decline here and there..now with the arms, it got obvious first time for the doctors, because it is always quite symmetrical and not abvious. Because there was no functional loss until now..
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Re: gorge spasm - again...

Postby German2 on July 12th, 2015, 1:58 am

..and everyday is worse now than that before. What can it be...muscle loss lower amrs, power loss hands and high muscle tone. I feel like a guitar side...What makes it worse is that I have a huge depression now.
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Re: gorge spasm - again...

Postby Yuliasir on July 12th, 2015, 2:34 am

as for the throat spasms - we all experience it being in a stressful situation, so I do not wonder you got them. It is literally when we are crying without tears... those are felt like painful spasms, like strong pulsation of the throat preventing from speaking etc. - but they go away and have no major consequences. Considering you have a lot of reasons to cry - I can assume you have this variant.
There is also another type of spasms - sharp spastic pain in the throat with the tearing, it happens when cold air gets on the vocal cords, and this is due to improper breathing (too deep and too fast). With me it had happened because of vocal lessons, and my teacher told me it is due to the fact I am breathing too deep trying to make a vocal support. Again, stressed people often try to breath, sturggle to breath, so it is no wonder thay may have that type of pains.

Spasms caused by neuron degeneration usually are associated with eating/drinking/swallowing and are caused by reflex ark disruption. They usually prevent the victim from normal eating/drinking or swallowing and require gastrostoma/saliva pump pretty quickly after emerging. As this is not your case, I suppose you have something of the above mentioned.
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Re: gorge spasm - again...

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