Old 04-06-2019, 06:37 AM #1 (permalink)
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Default My wife (36y)

Hi,
8months ago we was on holiday, she run, rode a bike, walking 10km. In august she has started to have fasciculations in the thighs and with the index finger. In october she got damage to peripheral nerves diagnose without any motor neurons damages. In Fabruary this year with made new testes and she has all motor neurons damages, bulbar and piramidal syndrom. Now she can't move her legs or arms.

But in december the muscle between the 4th and 5th finger was rebuilt and she could move thumb of the hand. 3 days ago she told me that she can a little move fingers in hand.

Is it possible to rapid/fast disease progression ???
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Old 04-06-2019, 11:57 AM #2 (permalink)
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Default Re: My wife (36y)

First of all, I’m sorry you find yourself here. Your wife certainly has had some worrisome symptoms.

The history is not typical for ALS, however. To go from healthy to being unable to move arms and legs and also with bulbar symptoms in 8 months is extremely fast progression. Also the things you mention about peripheral nerves, pyramidal system involvement, and some improvement in the thumb from rebuilding a muscle — none of those are things we see in ALS. I realize English is probably not your native language and that there is likely more to the history.

Did you see a neuromuscular specialist? If not, I definitely recommend it.

If they did confirm ALS/ MND, then this is extremely rapid progression, and we’ll do our best to support you. Let us know how we can help.

Last edited by KarenNWendyn : 04-06-2019 at 12:05 PM Reason: Revise content
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Old 04-06-2019, 01:52 PM #3 (permalink)
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Default Re: My wife (36y)

I would agree that she should have a second opinion on the diagnosis, especially, as Karen points out, we don't usually see "rebuilt muscle" in ALS. This is said to be the best center in Poland, if you have not been there as yet:

Medical University of Warsaw
Banacha 1
02-097, Warsaw

Phone
+48 22 5992857

Fax
+48 22 5991857

neurologia1-sekretariat@wum.edu.pl

Best,
Laurie
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Old 04-07-2019, 04:53 AM #4 (permalink)
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Default Re: My wife (36y)

Yes my english is not fluently, sorry. In October last year we made test EMG and ENG in 2 diffrence laboratory, they coinfirmed that noone motor neuron is damaged, just peripheral neuropathy. In the end of December her muscule rebuiled, the doctor and physical teraphy confirmed. In the start of begining all symptoms we have had neurolog doctor with als specialist(Iwo Sugocki). Before he told us that als is immosible, he is a polish national consultant ALS. Also he show my wife's tests to one of doctors in Warsow Hospital Banacha. They confirmed his diagnose. After new tests in February from hospital they told that it looks like als diagnose but it's so strange. The doctor from hospital which put this horrible diagnose after 3 weeks got new tests - positive igm GM1 and GQ1b, positive dsDNA, normal reference creatine phosphokinase. And after they don't know what my wife has. We going to another hospital but 12th of May. In Banacha Hospital we should wait about 5 months, it's to long.
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Old 04-07-2019, 10:06 AM #5 (permalink)
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Default Re: My wife (36y)

Again, I’m so sorry about her diagnosis.

The GM1 antibodies can be seen in motor neuron neuropathy. The anti-double stranded DNA antibodies can be seen in systemic lupus. Both those conditions are autoimmune (unlike ALS) and have treatments, so it would be helpful to get that additional opinion.

I wish you all the best. Please keep us posted.
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Old 04-07-2019, 01:48 PM #6 (permalink)
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Default Re: My wife (36y)

Thank you for request and support.

The doctor from the hospital where we'll go on May 12,who saw the results, stated that the case is strange and getting to know the wife's history from years ago and now can expect MMN, lupus disease, psychiatric disorders.

We have respiratory examination test and it's 100% ok and there is no problem with swallowing and drinking.
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