Am I there know?

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Am I there know?

Postby German2 on November 15th, 2014, 5:14 am

Hi together,

I have 2 years and 2 month of neurological symptoms now. 16 month of muscle twitching and muscle pain. Sometimes it got better and sometimes worse...Now I am facing weak legs and muscle vibrating after exercises when laying in bed. I feel whole body weakness sometime and am shaking accordingly. My left kniee showed a lot of degeneration in MRI. I had 2 weeks of lymph edema and know I am facing a dent on my shins getting deeper (right more than left - s.t pain there). I have in addition double sided ulnar nerve syndrom with my hands getting numb in the night (with according emg and NCtest). My lower arms got smaller, as well es my hands (told, it is SUS- but that can just explain that part). There is pain from my shoulders down to arms and fingers so that it is getting hard to hold a cup of coffee in the morning. My whole body freaks out with shaking and muscle pain. I have been to countless neuros all telling me there is nothing. My reflex test is normal. Nerve conduction tests (motor and sensible) are normal. CK level is in range. So what is going on? I feel that it goes down and down and end is near. Could it be that MND is not recognized for that long time? I have no functional restrictions yet. WAlk on toes and heels works. But could it come with atrophy first? I don't know how to live on....
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Re: Am I there know?

Postby German2 on November 15th, 2014, 6:54 am

For the experts among you: My Transaminase values (GPT/GOT) went up within 10 days from 25 (10-35) to 114 (GPT) and 17 (10-35) to 58 (GOT). A high GOT indicates muscle desease. ..I am so scared, though no neurogenic one, as far as I learned from google..
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Re: Am I there know?

Postby LKP1231 on November 15th, 2014, 9:25 am

I'm sorry you are feeling so bad. MN D would have been clearly seen in your testing especially by now. That is one thing you should not worry about anymore. I'm sorry I can't offer you more, clearly there are issues causing you pain and worry. Please at least know that this certain disease is not the cause.
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Re: Am I there know?

Postby German2 on November 15th, 2014, 11:18 am

Dear LPK,
thank you for your understanding..I hope you are right. What is strange is the flare ups of very sick feeling lasting several weeks. The Lymphedema which vanish as fast as they appear...(normally lymphedema are not reversible as I am told). These strange processes take all my life energy. And the diffuse muscle decline at my extremities. I don't know how to stand all that any longer. Maybe the changes in my GPT/GOT gives an indication to any of the doctors.
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Re: Am I there know?

Postby Bibi on November 15th, 2014, 12:20 pm

Sorry to hear that you feeling so bad. Do you have any apointments with doctors soon ? I know that not nowing what is going on is very hard to live with. I hope that You soon Will get A diagnose of some cureable !
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Re: Am I there know?

Postby Yuliasir on November 15th, 2014, 2:13 pm

German,
Singificantly elevated GOT/GPT (or ALT/AST, as far as I understtnd) means rather you may have in order of decrease liver troubles, bile duct troubles, congestive heat disease, diabetes, EBV infection (mononucleosis) and finally, the least probably, myopathy. If your CPK is normal during those days, this means your elevated transferases ARE NOT due myopathy but rather due to liver or bile duct problems. Please note they also are prone to fluctuation and only a few tests in line with significantly elevated levels would indicate you have some physical issues need to investigate. If oyu are taking any drugs, especially NSAIDS, this will aslo increase your transaminazes. Many of conventional meds increase them.
As for lymphedemas, you probably had regular edemas related to hormonal fluctuations which emerge and vanish in a range of days and are not dangerous. I have them for years and must say they are annoying but really harmless.
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Re: Am I there know?

Postby German2 on November 15th, 2014, 11:47 pm

Dear Yuliasir,
thank you for your answer! I don't have my cpk level testet when taken the Transaminase values. Just 10 days before, both were normal. I will have the cpk level tested tomorrow morning I decided and go to a lab. I took Ibuprofen for several weeks (not daily). Don't know whether that is the cause. But symptoms would be fitting to myopathie. My edema were not filled with water but with lymphe. But anyway, they are gone now. I don't know what's going on. I felt so sick for 3 weeks that I hardly could do anything.

Thank you all. I thought everything would get better by the time. But it is not. Doctors telling my, if it would be ...then you would definitely have more restrictions by now. I hope that is right.
Thank you all for reassuring words!
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Re: Am I there know?

Postby Yuliasir on November 16th, 2014, 1:39 am

I must say none of our edemas are filled with water :))) Cyclic edemas are produced due to the fact that hormones are changing our blood viscosity (quite significantly) therefore part of plasma is going out through the vessel walls to compensate it and we see edemas which last for 2-3 days and resolve as soon as bloos viscosity gets normal again. Lymphostatic edemas due to problems with vein valves are more sustainable and require massage, and lymphedemas due to heart or liver disease or disease of lymphatic system are generally very sustainable and require systemic treatment of underlying disease. They tend to expand from limbs to the whole body with the time.
What often makes us to waste spiritual energy and believe we have certain diagnosis is the fact that we think diagnosis is defined by one or two signs or we misinterpret level of changes we have or we rely on non-specific indices to make a self-diagnosis. For example, to be suspected as myopathy patient, you must not only have several consequtive significantly elevated transaminaze PLUS significantly elevated CPK (WITHOUT other possible causes of elevation, like inflammatory disease, meds, physical activity, liver disease, heart disease etc.) PLUS clinical weakness (not fatigue). Significant elevation in case of myopathy is about 50-100 times compated to normal level, not three times like in your case.
EMG also is specific in case of myopathy (can not remember if there were any suggestion other than ulnar syndrom). MRI also shows substitution of muscles with the fat and fiber.

So it is a set of signs, which have to be in constellation. I do not know if your doctors suspect myopathy in your case, I just would like to point that we often see just a part of a picture ot take nonspecific issues for specific ones (same as we take twitches for ALS symptomes).

For now you have only relatively moderate elevation of transaminazes on the edge of effect produced by NSAID/inflammation, also not yet sustainable, and fatigue, but not clinical weakness. I am not a doctor, but really with constant sickness and fatigue and subfebrile fever I would rather think about a source of inflammatory process somewhere in the body rather than for myopathy. what are fever figures you have? Was it constant or had rise in certain hours of the day?
Last edited by Yuliasir on November 16th, 2014, 3:50 am, edited 1 time in total.
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Re: Am I there know?

Postby German2 on November 16th, 2014, 3:39 am

My temperature was around 37,5 with ibu. I did not measure on a regular basis. I felt like I had an inflammatory process going on in my body, so I took Ibuprofen. I proceeded with my exercises for neuros told me so. And it is hardly possible to stay straight so I have to train. But I had a kind of systemic reacions on the exercices with body shaking and vibrating, don't even feel my arms in the morning and hold a cup. I did some push-ups. Now I have back pain and myolgelosis. My calfes were always strong and now they are soft and like pudding, with dents at the shints and pain on the shints. To keep my energy I have to eat lots of sweets the whole day. I am inhaling them somehow. And don't gain weight. My problem is not to be taken serious by most of the doctors. I have a resting pulse of 90. But my GP did not even wanted to measure my bloodpressure and said: You don't have anything darling. And I was hardly able to drive to him. My husband had to pick me up there.With the EMG they did one leg muscle. That was ok one month ago. With the EMG of my hands, one neuro commented that there are anteriour horn cells degenerating (not the one who performed the EMG), because of big MPU. I am so sure, there is s.th. going on but nobody is willing to give me thorough investigation for I have visited so many doctors before. ...
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Re: Am I there know?

Postby Yuliasir on November 16th, 2014, 5:05 am

If you have 37.5 with ibuprophene, then there should be a reason I think. I was asking about figures becasue we normally during the day may have rise up to 37.2, adn this si not related to any problem. But 37.5 with NSAIDS is of course not this one.
This is definetely not from fear and anxiety.

Strange is that your doctor doesn not react to that.
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Re: Am I there know?

Postby German2 on November 16th, 2014, 5:25 am

...because I have the imprint "hopeless case" I am afraid ;-(
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Re: Am I there know?

Postby Yuliasir on November 16th, 2014, 6:03 am

well I think you may be a hopeless case to diagnose you with MND... but a source of inflammation for three weeks should be evaluated anyway... usually people can not imagine a fever or mistook any other symptome for it... I mean this one is quite clear.

Could you try any of specialized centers? Big clinics? Really sad to read about your ordails...

I remember we had a fellow here who had suffered from severe pains in the scalp and in the skin overall on the body, and it took her 2 years to get simple skin biopsy to reveal she has small fiber neuropathy (however I donot know if the origin of this neuropathy was clarified or not), however in fact nobody knows why her doctors did not decided to do this very simple test fitting her complains from the very beginning.
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Re: Am I there know?

Postby German2 on November 16th, 2014, 7:36 am

Well, I have an appt. with an Immunologist who is regarded as professional at the end of november. And an appt. with an endo at the beginning of december. Actually I am waiting on those two visits, hoping it brings me a bit further...Otherwise I will write to a few centers of "rare deseases" as soon as I have my written dx of eds..On the other hand, I have the impression, that doctors then all put it on this desease and don't feel responsible. So maybe it is better not to show..Tomorrow I am seeing my neuro again and will ask for a muscle biopsy. Don't know why they don't do it. As soon as you have "anxiety and depression" in your track record, it gets taugh to push forward diagnostics.
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Re: Am I there know?

Postby German2 on November 16th, 2014, 7:53 am

As far as I can see the health system in Germany is going down. It follows simple rules and it's more steered by policy then by health requirements. And nothing is interdisciplinary..Was that fellow also from a European country?? Do you remember?
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Re: Am I there know?

Postby Yuliasir on November 16th, 2014, 11:40 am

she was from some of Scandinavian countries as far as I remember.

lack of interdisciplinary approach is really not good...
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Re: Am I there know?

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