gorge spasm - again...

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Re: gorge spasm - again...

Postby German2 on July 12th, 2015, 7:22 am

That is a very good approach. Indeed, my life can't be more stressfull. And my throat muscles react on stress as well as on sports.
I saw my father completely degenerating during the last month due to a complete mistreatment in different hospitals. Now I have to organize his hole life though I do not have the power to organize mine with the children.

My muscle tone is high again. I was very ok with my small dose of Xanax up to know, but doctors think it is not a good solution. So I make a restart today with Methocarbamol. I also have Tizanidin and Baclofen here. And of course Pregabalin and a lot of (forbidden) Flupirtin. I can choose....;-) Any suggestions what to prefer ? ;-) If I would take everything I am recommended, I would be alrerady a wreck. I am sorry, again, for writing these negative things..but for me this is better than to cry...Thanks for reading!
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Re: gorge spasm - again...

Postby Yuliasir on July 12th, 2015, 11:26 am

Oh your lot is really very hard...

as for the medication, I would better decide this with one for the doctros you trust more than others. Because you have so many contradictory treatment schemes, and some medications could be incompatible or badly compatible... Anyway it is better to discuss this.
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Re: gorge spasm - again...

Postby German2 on July 12th, 2015, 11:30 am

Yes, that's true...but my appt. with the one I trust most is in September...too long for me to wait. So I start on those medications which I can take short term. Pregabalin is more a long term decision I would think..And as far as I know there is a high potential to get addicted to it. Esp. I don't know what to do with the cortisone infusions I have here...;-) some docs are pro, some contra...That expresses the great disaster I am into. The problems with my hands get bigger. They feel so so strange and not belonging to me. But I had another strange experience today so I do not trust myself somehow. I drank some water and it tasted like it would be with cayenne pepper or something like that. I was afraid someone had poisened our water from water tap. But it was normal as my husband stated. Strange...
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Re: gorge spasm - again...

Postby Yuliasir on July 12th, 2015, 12:33 pm

well, there are two options for feeling the water is bitter: 1) your drugs make your feel of the tase perverted (it happens sometimes); 2) there are certain substances, whihc some people feel as extremely bitter and other do not due to genetic difference. But I would rather think about the first option.
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Re: gorge spasm - again...

Postby German2 on July 12th, 2015, 2:04 pm

yes, that sounds convincing to me...thank you!! so I just have to find the answer for the pain in my lower arms and why my hands feel more and more clumsy..Against the pain I am wearing a certain tennis/golfer ellbow band on boht sides. It helps a bit. But I am sceptical whether it is something like this. Thoug my mother had a chronical tennis arm..but just ONE. I have ordered today a certain training tool for my arms, which I can use without stressing my ellbow. I did some exercises today, giving pressure on my ellbows. And now I have horrible pain.
My twitching status is unchanged: some twitch here and there, mostly just one. Hotspot under left foot since 2 years, stays unchanged. I just ignore it, even if my toes are moving like they do sometime.
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Re: gorge spasm - again...

Postby German2 on July 13th, 2015, 12:48 pm

the pain in my arm got stronger and stronger...I made a mistake and googled that. And I found in an ALS Forum exactly my symptoms...pain in arms, esp. in the night, pain in muscle before it is dying. Very tight chest...exactly those things. I know I am there...I do not see any chance to get out of it clear and safe...I have cramps in my left hand now...I can see the muscle declining more and more each day.
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Re: gorge spasm - again...

Postby German2 on July 14th, 2015, 1:04 pm

Today I was at a local neuro...she gave me a clinical and said...all ok. Nothing neurological can be found. Then I went to a physio therapist. And she confirmed what all the other physios told me before: she never experienced such a high muscle tone in the back. In the afternoon I had a long planned appt. at my neurosurgeon. I asked him to touch my back and he immediately suggested to do a muscle, skin- and nerve biopsy. I think this is the best next step which I can do...beside trying to find a good medication to help me against the tone. Methocarbamol seems not working really good...

The neurosurgeon (who I appreciate very much by the way...one of the 2 docs which I trust) thinks it is a real muscle problem. Maybe some kind of metabolic or mitochondrial problem, because after a small examination he stated that just my statical muscles are involved. That means, just some special kind muscles...Maybe that is the reason whe the neuros cannot see a real spacticity...
I hope that the three-in-one biopsy brings me further....

I will cancel my hospital stay next week because there is a new perspective
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Re: gorge spasm - again...

Postby leroyb on July 14th, 2015, 1:35 pm

I'm a member of an Isaacs, neuromytonia etc group and they post a lot things that you have - have you been tested for any of those conditions?
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Re: gorge spasm - again...

Postby German2 on July 14th, 2015, 2:47 pm

I don't think so...To be honest, somoe of the neuros don't believe me (except my neurosurgeon and another one), or give me just any medication. Actually, my muscle tone is so high, that I hardly can't stand the pressure. But it does not bring my limbs in strange position or s.th. like that. Do you think the biopsy can bring some light into this??
I've read something about neuromyotonia. I read that it can also be from carcinoms...My neuro want me to do a special testing for a serotoninie producing carcinom for my serotonine was so high...I better follow his advice then.
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Re: gorge spasm - again...

Postby Yuliasir on July 15th, 2015, 3:37 am

well, there is a difference between muscle rigidity (tension) and high muscle tone caused by motor cortex lesions.
Considering the fact your neurological exams do not support high tone and reflex changes associated with motor cortex damage (contractures, hyperreflexia etc.), your problem is rather rigidity. Muscles of people suffering with MND with upper motor neuron damage are also rigid, but they also have contractures (specific position of limbs) and other issues seen on clinical exam and EMG, which you do not demonstrate (while SHOULD if it would be due to UMN signs).

Rigidity could be due to postural issues (that is why we often have pains and spasms in the neck, arms, back and legs, and in jaws too). Constant stress also favours rigidity and tension.

But as you menion high serotonine... if it is constantly high, it could cause rigidity too. So there is a good reason to serach if your body does not pump you up with unnecessary serotonine.

On the other hand, skin, nerves and muscle biopsy definitely points out of MND. It is perforned to see if you have small fibers neuropathy and/or myopathy. Both are related to metabolic disorders, for example, classical cause of SFN is diabetic foot (loss of sensitivity in the foot), and thyroid diseass often result in myopathies (muscle wasting), and there are other examples. SFN means yout tactile nerves become completely messed up, so your body percieves virtually any signal as pain (this is called allodynia). So if oyu have SFN, this might explain pains, if you have myopathy, it may explain muscle wasting, and if you have any endogenous source of serotonine, that may explain rigidity, depression and other issues...
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Re: gorge spasm - again...

Postby German2 on July 15th, 2015, 10:45 am

Dear Yuliasir,

thank you for your detailed answer...maybe it is rigidity, yes. But I was of course shocked that an MND sufferer described quite similar problems as I have..
Yes, my neurosurgeon wants to do a muscle biopsy for he now thinks it is something like myppathie...
but to be honest that does not sound logical to my. It all started with a freaking out periferal nervous system (nerve pain, cold/hot sensitive issues...burning feet etc..)
So I think that nervous system is definitely involved. Could be a mixture of muscle and nerve? I don't know.
What really bothers me is the fast muscle loss in left arm and a left hand which is more and more often get stuck/feels weired somehow.
I know that there are MND cases with peripheral involvement in the beginning. One neuro told me so...it is rare, but it does exist. So for the sake of my own mind, I will do 1) the serotonin re-testing at the weekend, get me an appt for the muscle biopsy but will go to the hospital next week. They are specialiced at Polineurpathy..
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Re: gorge spasm - again...

Postby German2 on July 16th, 2015, 12:52 pm

stiffness of my hands get worse each day...I pray that there could be another explanation for that then ALS...but also my lower arm muscles hurt so much. Hope the next hospital will find an answer which I can stand...
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Re: gorge spasm - again...

Postby German2 on July 16th, 2015, 5:34 pm

I've taken more pills than before...throat spasms again, lower arms hurt like hell after exercises - no chance to rebuild the lost muscle this time, my chest is so tight I can hardly stand. My hole body feels stiff now..I know what it is now. I have no hope lost.
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Re: gorge spasm - again...

Postby German2 on July 23rd, 2015, 8:14 am

I am again in hospital now since two days..mep and sep yesterday was fine. Yesterday eveving my throat muscles went so stiff that everything hurt. Even my face felt stiff and twitching around my mouth half night....they agreed on my steel like back muscles....emg was today. First evaluation: all clean. Even my painfull lower arm muscles. Detailed report will follow. But no spontanuous activity or polyphasia..
I have to fix that:
Stiff muscles/high tonus whole body
slight twitching which got more again last days. Esp. In the back
hurting muscles and ..wasting (due to some doctors and my own opinion)
Sometimes my hand and feet feel like beeing offline. Hard to describe
is it a ghost in my body...hunting my mind down...? Doing everything to make me think it will soon be over?
Or is it stiff person or very early parkinson? They could not exclude literally...
and yes...I feel released now to have a clean emg again this time. They did three muscles in left leg and two muscles in right arm. Very extensively...
so what fan we learn from this...even if symptoms are strongly pointing in one direction...it does not nessesarily mean it's worst case. But even by feeling a release now i do not jump in the air..my symptoms are really restricting my comfort.
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Re: gorge spasm - again...

Postby German2 on July 27th, 2015, 11:10 am

Today i had a last testing...lactat ischaemie test...also negative. So i leave the hospital tomorrow without any findings but worsening symptoms. Bodywide twitchin is back, too. Stiff hands, tired arms, gorge cramps and swallowin pain...i don' t k ow how to proceed in life...
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Re: gorge spasm - again...

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