holes in my wrist discovered

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Re: holes in my wrist discovered

Postby German2 on April 29th, 2014, 5:34 am

No, I am sure, because she told me that the second time. She told me that the Nerve conduction speed showed certain "noticable issues", and after that it would have taken 4 years until the patient developed first weaknesses at his fingers. He would be very untypical and would have a kind of benign form of the a#s. He would have had some other symptoms she did not tell me..
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Re: holes in my wrist discovered

Postby TwitchyDoc on April 29th, 2014, 8:42 am

You are missing the main part - what brought him to a neurologist...There is no doubt there are slowly progressive, atypical variants of ALS (there are a few familial variants with very prolonged course, for example) but there have to be some symptoms. I doubt he went to neurologist just for a regular EMG...
What you describe could be Kennedy disease which involves subtle sensory issues but that is not ALS, it is a different MND...
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Re: holes in my wrist discovered

Postby German2 on April 29th, 2014, 9:19 am

Ok...I am not going to google it because I have sensory issues, too. In both cases I hope I'm not involved. Maybe the neuro was cobfused about the MND's...it did not help me anyway that she mentioned that.
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Re: holes in my wrist discovered

Postby TwitchyDoc on April 29th, 2014, 9:32 am

Dont worry about Kennedy's disease, it is a familial (though one can be the first to manifest the mutation), benign MND that progresses over 30-50, causing disabilities around the 6th-7th decade..
Your neurologist does not sound like a specialist in MND area so her opinions are quite useless. Saying she had a patient with ALS who demonstrated weakness after 4 years is like saying you have a patient with cancer who demonstrated a tumour after 4 yours - it does not make sense at all.
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Re: holes in my wrist discovered

Postby German2 on April 29th, 2014, 10:02 am

Thank you! Maybe I should look for a new one then and make an appointment for in a few month. Until that, I try to rely on the report of the ALS expert, that this would be not my story and it would be s.th. else...And on the great support here in the forum.
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Re: holes in my wrist discovered

Postby TwitchyDoc on April 29th, 2014, 10:20 am

Your welcome, do as you say as this is the best and smartest thing you can do. If ALS expert said so, who am I or anyone else here to disagree ;) (but I do not disagree anyway :)
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Re: holes in my wrist discovered

Postby German2 on April 29th, 2014, 11:54 am

Oh, you seemed to have a lot of knowledge in that respect. More than my neuro...
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Re: holes in my wrist discovered

Postby leaflea on April 29th, 2014, 1:02 pm

Okay German2. I am confused. It was a GP who told you you'd just have to wait to see what happens, right? So who is the ALS specialist you are talking about? Have you seen about 12 doctors now? Did the neuro tell you something different than the GP? Any guy who had 4 years before weakness has SOME other symptom, and I highly doubt it was twitching. I am getting confused about which doctor you refer to when? Did you read about my wrist and what the ALS specialist said about it ? I'd like to post a pic for you. I think bfs does change some contours of our bodies.
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Re: holes in my wrist discovered

Postby German2 on April 29th, 2014, 1:33 pm

leaflea wrote:Okay German2. I am confused. It was a GP who told you you'd just have to wait to see what happens, right? So who is the ALS specialist you are talking about? Have you seen about 12 doctors now? Did the neuro tell you something different than the GP? Any guy who had 4 years before weakness has SOME other symptom, and I highly doubt it was twitching. I am getting confused about which doctor you refer to when? Did you read about my wrist and what the ALS specialist said about it ? I'd like to post a pic for you. I think bfs does change some contours of our bodies.


Sorry, I did not want to confuse s.o.
No, I have visited 10 neuros (a lot, I know..). The one who told me I have to wait and see what will happen was a GP whom I visited in a different matter and she commented my situation in general.
I have visited the ALS ambulance 4 weeks ago and today I had a regular appointment at my local neuro to discuss the status quo and the outcome. And she told me about this guy with the 4 years...she told me the same story during a former visit. But I agree that this sounds strange. The ALS expert told me that the latest after 12 month there is weakness. And in the latter case ist is really a very slow progression...
Hope I could clarify a bit.
I'll send you a PN with my mail...pics are very welcome..
Thanks a lot! Of course I read your message..
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Re: holes in my wrist discovered

Postby nrwtwitcher on April 30th, 2014, 2:04 am

Hi, I am very interested in pictures too :wink: ! Especially from the arches of the feet, the inner side.
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Re: holes in my wrist discovered

Postby German2 on April 30th, 2014, 6:06 am

My personal desaster (which does not mean others have none) is going on....4 weeks after the ALS expert reported that there is nothing (after clinical examination and nerve conduction speed measure) I now have now holes at my back hands, too. They are getting deeper every day, but similar on both sides! It is happening in my hand and feet parallel. Does that make any sense in respect to a severe desease? I am so tired of all the fears and anxiety and I am thinking over and over to get a further EMG (I would have to pay privately...because no neuro is willing to do one any more. I had a very big one 8 month ago). What do you think? On the other hand I am starting to resign...and think of ..just let life go on. But don't know how...
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Re: holes in my wrist discovered

Postby Yuliasir on April 30th, 2014, 6:38 am

german
losing fat on feet and arms but keeping it in the belly part may be related to adrenal glands disorder. Did you have any realted tests?
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Re: holes in my wrist discovered

Postby German2 on April 30th, 2014, 6:50 am

Yuliasir wrote:german
losing fat on feet and arms but keeping it in the belly part may be related to adrenal glands disorder. Did you have any realted tests?


No, never. I had a blood testing about what ever to discuss next week. But I am quite sure, adrenal glands is not included..I will ask the doctor..I am visiting a new one with a good reference in Hashimoto...Which issues are tested then?
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Re: holes in my wrist discovered

Postby Yuliasir on April 30th, 2014, 7:07 am

Do not know exactly, endocrinologist may tell you more. I just remember that some diseases involving adrenal gland disynction, have specific features like slim hands and arms while the body is rather getting more 'puffy'.
Anyway you would see endocrinologist I think with your probable hashimoto, just ask if you need to test other endocrine systems.
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Re: holes in my wrist discovered

Postby German2 on April 30th, 2014, 7:27 am

Thank you so. Just made an online testing about hormone problems...And what did I receive: adrenal gland problems. Maybe this is connected to the Hashi...
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Re: holes in my wrist discovered

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