Old 11-13-2018, 11:15 AM #1 (permalink)
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hello every one my name is Najib and i have father who been diagnosed with ALS 6 month ago and i want to get more info if that possible.

with ALS my dad has been diagnosed with hypothyroidism and need an urgent Surgery to totally removal of the thyroid gland . but his doc said he cant do any kind surgery due to ALS because he may not wake from Anesthetic.

my first question is what should we do ?

my second question is , lately my dad start Coughing so much and he cant get enough sleep any more because of that . is that have to do with ALS or something else ?

my third and last question is . what can we do with the excessive saliva ? , he drooling all the time with non stop and that annoyed him so much is that normal ?

sorry for all those question please help and thanx in advance.

Najib.
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Old 11-13-2018, 03:53 PM #2 (permalink)
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Default Re: help

Hi Najib, hypothyroidism would be treated with giving a person thyroid hormone, not removing the gland (which would normally not be done other than in cancer), so I am not sure what you mean. Do you mean hyperthyroidism (too much hormone)? There are drugs for that.

Has your dad's lung function been tested to see if he needs BiPAP/NIV? Coughing is common in ALS, but it is important to know if it relates to breathing. From what you say, excess saliva may play a role.

Pineapple/papaya juice, a suction machine, warm liquids, soda, Alka-Seltzer (if his doctor says it's OK) and controlling the room humidity/dust are other things to look at. His head should be elevated as much as is comfortable for him, during sleep.

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Old 11-14-2018, 08:14 AM #3 (permalink)
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Welcome Namibia,
I don’t have answers to your questions just want to welcome you
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Old 11-14-2018, 08:15 AM #4 (permalink)
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Meant najib was
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Old 11-15-2018, 11:31 AM #5 (permalink)
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thank you Lauri for your reply as always and your helpful advice
and this is the story .
before we discover that my dad has ALS we've been seen a doctor who said that hypothyroidism is the cause of hi speech and swallowing issue in 8 month ago. but after we change the doctor with another one the last one said that my dad have hypothyroidism but it can't cause speech and swallowing problem she give us drug name "Dimazol" "witch we cant find any more in any Pharmacies in my country "and advice us to go see neurologist and then we discover ALS. but in last time we went there witch in 3 days ago she said we cant do any treatment that can cure the thyroid gland and because of that we need to go with surgery and we cant do that either we stuck .
last time we cheeked my dad lung function was 4 month ago and tomorrow we gonna visit neurologist to see if we need to do another one .
thanks Chally for the welcoming and wish you the best .

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Old 11-15-2018, 01:28 PM #6 (permalink)
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Default Re: help

If a given drug is not available in Morocco, you can often have it shipped via an online pharmacy.

FYI, Dimazol is used for hyperthyroidism and methimazole is the generic that is very common around the world and can be shipped.
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Old 11-15-2018, 02:44 PM #7 (permalink)
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Default Re: help

thank you again Laurie.
and its gonna get more expensive plus i can't buy any thing from internet . but ill try do something about it thank you for your helpful advice and valuable information.
Dimazol is the only available drug for hyperthyroidism in Morocco .
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Old 11-15-2018, 05:09 PM #8 (permalink)
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Default Re: help

I understand it is the only drug available from a Moroccan pharmacy, and I saw that there have been supply issues with that drug in Morocco, but my point was that it is chemically the same as a drug that you can have shipped, recognizing that would be an expense. It would also cost money to treat the complications of hyperthyroidism like heart and eye problems, as well as the effect on your dad's quality of life.

I do not know the costs of surgery there, but people with ALS do have surgery when they really need it, if they expect to live a while longer. In the room where they do surgery, there should be machines and drugs that can help control saliva and choking. You might ask further how serious they think the risk is of his not waking up, and why they say that, and he should be in a position to make his own best choice about that.

It might also be worth considering exploring surgery outside Morocco if that is possible. But first, trying the anti-thyroid drug could have some benefit.

Best,
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Old 11-16-2018, 08:00 AM #9 (permalink)
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I have friend who gonna help me buy the drug from internet .
i don't know the cost too ill find out .but the doctor said he cant do any surgery that involving Anaesthetic drug or something like that i don't know if is that true or not. we went to 3 other neurologists and non of them give us clue about surgery is like they don't know much about ALS .
surgery outside my country its impossible at this moment but thank you for the suggestion .
and in last i want to give you big thankyou Lauri for helping me out you cant imaging how is that make me feel . this is the only place i can share and look for help . and please don't get annoyed when i ask or look for help in future .

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Old 11-16-2018, 12:36 PM #10 (permalink)
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Najib if you have a prescription written in French may be I can get it and send it to you i don’ know
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Old 11-16-2018, 01:51 PM #11 (permalink)
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You can ask questions or comment any time here, Najib. We welcome that, and no one will be annoyed.

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Old 11-17-2018, 11:40 AM #12 (permalink)
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that so sweet of you MarieLaure offering something like that thank you so much but don't worry ill figure it out .
thank you Laurie that is mean lot .
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