Hi there,I realized one time, that most of my pain and problems result from a very high muscle tone which even caused me changing of my joints.I know that this is not a good sign and there are not so many options what might cause this.Since yesterday the muscle tone was so high that I could hardly breathe anymore. My arms like hell because muscles are kind of biting my bones...As I could not stand that pain I went to the doctor and got a medicine which influences central nervous system (Methocarbamol). It worked immediately...I asked Dr. Google which deseases cause that...it was beside brain stroke just MS and ALS. And I know meanwhile why some physios predicts me to get one of it...If I think logically about it, polyneuropathy seems to be excluded...? Because if it is that, the med would not work...right?Is there any other explanation?
High Muscle Tone Causing Pain
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JuanitaPeralta
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You are referring to hypertonia. Hypotonia is what is associated with Motor Neuron Disease and MS, among other things.Causes of hypotoniaThere are several causes of hypotonia, these include genetic conditions, nutritional causes and so forth. (1-4)Genetic causes of hypotoniaThere are several genetic causes of hypotonia, these include: Down Syndrome – This is a genetic disease with a chromosomal abnormality where the 21st pair of chromosome has an extra chromosome. This leads to heart defects, mental retardations and other neurological complications. Prader-Willi syndrome is a rare genetic disease that causes restricted growth and learning difficulties Tay-Sachs disease is another rare and fatal genetic disorder that causes progressive damage to the nervous system. Williams Syndrome – is a rare genetic condition that causes defects in development, co-ordination and language. Spinal muscular atrophy is an inherited disease that leads to muscle weakness and a progressive loss of movements. Charcot-Marie-Tooth disease is yet another inherited condition that affects the myelin covering of nerves. Myelin forms a protective covering over all major nerves of the body. Connective tissue disorders include Marfan’s syndrome and Elher-Danlos syndrome. These are inherited and lead to defects in connective tissues which provide support to other tissue and organs.Nutritional causes of hypotoniaSome causes of hypotonia are a result of malnutrition, these include: Rickets – This is caused by vitamin D deficiency Malnutrition – Malnutrition in the mother as well as the baby or child especially with lack of adequate protein in diet may lead to hypotoniaCauses of hypotonia that involve the brainSome of the causes of hypotonia involve the brain. These include: Brain and spinal cord injury that may include bleeding into the brain Serious infections of the brain and its parts like meningitis or encephalitis Kernicterus – This condition is severe affliction of the brain of the new born with bilirubin from the jaundice right after birth. It may lead to severe neurological deficits, retardation, seizures and hypotonia or hypertonia (increased muscle tone).Causes of hypotonia at birth Prematurity – Babies born prematurely carry a risk of being born hypotonic. The condition often resolves as the baby grows Hypothyroidism – Lack of thyroid hormone at birth may lead to hypotonia. If severe it may manifest later as Cretinism characterized by coarse facial features, mental retardation etc. Sepsis – Severe infection in the new bornOther causes of hypotoniaOther causes of hypotonia include: Cerebral palsy Storage diseases – Inherited metabolic diseases that are caused due to lack of certain enzymes. Congestive Heart failure Hypoglycemia – Low blood sugar may lead to floppiness of the muscles Myasthenia gravis – is an autoimmune disease that disrupts signals between nerves and muscles and affects the neuromuscular junction. There may be weakness and increased fatigue. Babies with mothers who have myasthenia gravis may be born with hypotonia. Muscular dystrophy is a progressive muscle disease that leads to weakening of muscles and disability. In adults muscle hypotonia may be seen in Multiple sclerosis where myelin is damaged or in Motor neurone disease that leads to progressive motor nerve damage.
Dr Juanperalta,thank you for this list...most of it does not apply. So there is just MS or Motor Neuron desease left..if no one comes across with another idea....The only thing which I am going to exclude, too, is Ehers-Danlos-Syndrom. I'll have a skin biopsy in June... But this normally goes along with hypertonia, low muscle tone.
German, methocarbamol is a central muscle relaxant used for spasms relief. Well, high muscle tonus really is a warning condition but beside stroke, MS and ALS therer is also Isaac syndrome causing high muscle tonus... what doctors really say about this? usually high muscle tone is not something they neglect or could not diagnose...
....well, I did not present this problem up to now. Because I did realize it lately that my problems derive from high muscle tone. My physios did tell me. But now it is obvious to me, too because I can hardly breathe...Ok. No good sign..And I feel like someone is cutting in my calf, which I think is also not a good sign. Then I should summarize: Actually almost no twitching. Touching of my lower arms is very painful due to muscle tone. My first symptom started five years ago. The hot period started almost 3 years ago. No I am feeling that something nasty is there...Slight neurogenic changes in EMG, but obviously the high muscle tone was not measured in the investigated muscles. I do not feel comfortable at all....
Then I have to wait and see, if I am just a very special case, or if another reason can be figured out. Yesterday in bed I had a twitching of my left foot. But this was my hotspot anyway. In general I feel very dizzy, because of the relaxing medication. Maybe my worst nightmares come true...
Anyway, 3-5 years usually kill the patient in case of ALS, so another conditions should be in the list - stiff person syndrome, myxedema (however in this case condition should be evident, becasue myxedema people have specific appearance with edemas), extrapyramidal system issues (in the central brain), or even metabolic diseases like McArdle disease (however you had many urinalyses so extra myoglobine in the urine should be evident in case of that condition).
Another option came to my mind. As a child I had a severe skull-brain trauma and was operated on the brain...Maybe this has something to do with it? I always had problems with cramps, even in my childhood..and I had even regular nerve pain in my left leg when I was young...I say...just maybe. Of course I feel not comfortable with my high muscle tone. The medication helps so much, but this does not offer a solution.The positive thing is, that the high muscle tone which started in my foot ankles some weeks ago, vanished. My ankles hurt some time, but the very weired feeling causing lots of discomfort is gone. That was the time, when I bumped my feet against the furniture a few times per day. That is gone, too. But know similar feelings are there with my arms and hands..There are days, I can hardly use my right arm. And another day it is ok again.The doctor of neuro-muscle ambulance told me something about kind of light forms of MS and so on....I did not really ask her more about that. Maybe it is something like that...I don't know if in ALS there can be an early period of wax and wane symptoms over years...I never heard of it. I just have one female in my wider familiy where ALS slightly creeped into her life over many many years. But as far as I know it was proceeding very very slow and not waxing and waning...And in the end she suffered very much from strong psychological issues and was not quite aware of what was happening with her. She refused to see doctors...My thoughts of today...Now I face the problem that I start my stay in a pain clinic on Tuesday and therefore cannot see my neurosurgeon the other week. I waited on that appt. for three month. On the other hand, I never left a doctors office with an idea or a clue that brought me further. It were more the physios who gave me hints...and in that pain clinic I will have my own physio for three weeks...Maybe this is the better idea then skipping this option. ....? It is a difficult decision but I'm afraid just time will bring my diagnosis...It is a hard way I must admit.
...phantastic!!! I woke up without my voice. I am not able to talk any more. My track record is great: three doctors who gave me up because they don't have any clue what to do with my (my hashi doc, who said, she is not sure whether I have Hashi or not after all, my neuro, who let me wait 7 hours on my appointment and I had to leave without seein him, and my GP who told me explicitely that he would be happy when I would leave his office, because he has no clue what I do have). So I ended up in visiting just private doctors, which I pay by myself. I feel very left alone and very *beep* off from my fate. Now I do not know whether my voice comes back...and I just can say, the medication against the high muscle tone was fantastic for 2 days but now has lost its effect..I do not have any further expectations. I am just angry, very very angry..sorry for this negative post. Please keep your fingers crossed that only my voice comes back. 
There is only one further thing which came to my mind: I reduced my thyroid hormones very much (because many docs told me it is too much). From 162 mcg to 100 mcg Prothyrid 2 weeks ago. The thyroid gland problems can also lead to muscle problems and horseness...I did the reduction on my own, because my hashi doc sayed she is no longer sure how to treat me and never react again on my calls (it was also a private payed doc).Just in time I received an email answer of an alternative practicioner which I asked for a further treatment....she is the third one who refused a further appt. with the argumentation that my health would be a "too complex issue" for her to treat..On the other hand, it is an honest answer..
There is only one further thing which came to my mind: I reduced my thyroid hormones very much (because many docs told me it is too much). From 162 mcg to 100 mcg Prothyrid 2 weeks ago. The thyroid gland problems can also lead to muscle problems and horseness...I did the reduction on my own, because my hashi doc sayed she is no longer sure how to treat me and never react again on my calls (it was also a private payed doc).Just in time I received an email answer of an alternative practicioner which I asked for a further treatment....she is the third one who refused a further appt. with the argumentation that my health would be a "too complex issue" for her to treat..On the other hand, it is an honest answer..In the pain clinic they set me now on Flupirtin. But I do not feel very well with it to be honest. The last days I was out of medication and I had really good effects with electro therapy. It was never tried before because I had the twitching. But I must say the TENS between my shoulder bladders really stopped this Phyton feeling around my chest. It does not trigger twitching.The doctor is convinced that my muscle tone is psychosomatic. I mean, ok. Let's try on this approach...I have no other chance actually.My bloodwork was ok, meaning especially my CK. The only pathological value was Glucose. But I am still waiting on my ANA and ENA lab to come. I receive it on Tuesday...This was done by my immunologist who told me that my lab work half year ago indicated an untreatable immune deficite. If the outcome is the same again, it is proofen.But I don't know if an immune deficite does explain what is happening in me...? Is there any connection?