MS mom needs medicine

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MS mom needs medicine

Postby Hedaya » Fri Jun 12, 2015 1:54 am

Dear all,

First of all I want to express my admiration for your courage in facing MS and your kindness in supporting the patients.

My name is Hadeel and I have created this account on behalf of my mother "Hedaya" who has been diagnosed with MS in 2007.
We are Palestinians from Gaza, but my mother lives in the United Arab Emirates (UAE), and I am currently studying in Germany.

In July 2014, my father (59 years old) lost his job in the UAE and he had to leave it. However, my mother (50 years old) is still in the UAE with an expired residency permit. She couldn't leave with my father because the aggressive MS made her so weak and she cannot move easily (she is now on wheel chairs and she has catheter). Because of the residency permit issue, she is not allowed to be treated in the hospitals and insurance companies refuse to cover her.

We have taken loans to buy her medicine (Gilenya) which will finish again in two weeks and we have no idea what to do next. It costs 11,000 AED (~3000 USD) per month and it is just way more than what we can afford.

I have contacted all MS and charity organizations in UAE (e.g., red crescent and MS support group) and they all refused to help without a legal residency permit. I had also tried with German and international organizations, but all replied saying I should look for local help as they don't have access to UAE.

We thought of taking my mother to Gaza, but as you know Gaza has no medical basics and when we asked about her MS disease they said there is no chance for her to get the medicine in Gaza!

Please help my mom :sad: , to whom should we go? who can help us?

Thank you in advance and have a great day!
Hedaya
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Re: MS mom needs medicine

Postby lyndacarol » Fri Jun 12, 2015 3:55 pm

Welcome to ThisIsMS, Hadeel. We are glad you found us. Your mother, Hedaya, is very fortunate to have you care so much about her.

I do not have the answer to your question, but there are many people at this website who are all around the world and who will probably have ideas for your mother's situation. It may be easier to find people with special interest and knowledge in Gilenya by posting on the "Gilenya" forum: gilenya-f43/

I, myself, choose not to use any of the MS drugs. I used Betaseron, Avonex, and Copaxone in the past, but did not feel that they helped my condition.

In the United States, it is sometimes possible for people in financial difficulty to contact the drug company that makes the needed drug. Some drug companies have compassionate programs which supply these drugs at no cost or at low cost for a limited time. Gilenya is manufactured by Novartis.

If your mother is not allowed to have medical treatment in hospitals in the UAE (because of her expired residency permit), and if there are no medical services in Gaza, I do not understand the reason for her remaining in the UAE. Perhaps there are friends and family in Gaza to care for her.

We wish you all the best.
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Re: MS mom needs medicine

Postby Hedaya » Mon Jun 15, 2015 1:58 am

Thank you LyndaCarol for your kind response and for sharing these information with me.
I will post the story at the forum you recommended and will contact Novartis too.

Regarding your wonder about taking mom to Gaza, we chose not to for many reasons. First of all Gaza is not safe at all and no one knows when a new war will start. Basic medical services are not available and it has been reported that hospitals are infectious. A friend works in a charity organization there and she told me that there are 54 registered MS patients and none of them have access to MS drugs. And many more living aspects made us believe that the UAE is at least safe and we are trying our best to get the medicine there.

I wish you are doing well without the MS drugs and hope science lands on a cure soon.

Best regards,
Hadeel
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Re: MS mom needs medicine

Postby 1eye » Mon Jun 15, 2015 6:11 pm

The fact your mom's on Gilenya indicates some doctors think she is still relapsing-remitting. However in the absence of any drug alternative that has shown any promise I am dispensing myself, and taking a 300mg per day dose of vitamin H, otherwise known as biotin. Contrary to all other so-called DMDs or "disease modifying drugs" (one may well ask how do they modify it if they don't know what it is), BIOTIN is NOT proven to be ineffective for relapsing-remitting disease,

There is no known reason why anyone with or without MS should NOT be taking biotin. It is very very inexpensive, almost free compared to any other MS medicine). As far as I am concerned, there is good evidence it does work, at the higher 300 mg dose. Considering all the harmless use of megadoses of the other vitamins, and the common use of biotin for animals, it seems quite reasonable to me.
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Re: MS mom needs medicine

Postby David1949 » Mon Jun 15, 2015 8:27 pm

1 eye.

Have you experienced any positive results with biotin yet?
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Re: MS mom needs medicine

Postby Hedaya » Tue Jun 16, 2015 1:02 am

I have searched about BIOTIN and found this interesting study:
http://www.sciencedirect.com/science/ar ... 4815000061

"Methods: 23 consecutive patients with primary and secondary progressive MS originated from three different French MS reference centers were treated with high doses of biotin (100–300 mg/day) from 2 to 36 months (mean=9.2 months). Judgement criteria varied according to clinical presentations and included quantitative and qualitative measures.

Results: In four patients with prominent visual impairment related to optic nerve injury, visual acuity improved significantly. Visual evoked potentials in two patients exhibited progressive reappearance of P100 waves, with normalization of latencies in one case. Proton magnetic resonance spectroscopy (H-MRS) in one case showed a progressive normalization of the Choline/Creatine ratio. One patient with left homonymous hemianopia kept on improving from 2 to 16 months following treatment׳s onset. Sixteen patients out of 18 (89%) with prominent spinal cord involvement were considered as improved as confirmed by blinded review of videotaped clinical examination in 9 cases. In all cases improvement was delayed from 2 to 8 months following treatment׳s onset.

Conclusions: These preliminary data suggest that high doses of biotin might have an impact on disability and progression in progressive MS. Two double-blind placebo-controlled trials are on going."

How nice to hear about "progress"! I am praying for these scientist to find the cure and all people get healed!
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Re: MS mom needs medicine

Postby Hedaya » Tue Jun 16, 2015 1:12 am

1 eye, one question I have is : how do you get a 300 mg per day?
The tablets I found have a maximum of 10 mg, do you take 30 tablets a day?
Do you feel any side effects?
Hedaya
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Re: MS mom needs medicine

Postby EricDrake » Wed Jun 17, 2015 10:58 pm

Hedaya wrote:1 eye, one question I have is : how do you get a 300 mg per day?
The tablets I found have a maximum of 10 mg, do you take 30 tablets a day?
Do you feel any side effects?


Some people solves it by taking 30 tablet / day but it is expensive and quite dangerous because these pills hav fillers which might be bad for you in this high amount daily.

Anyway most people are ordering pure biotin powder and either create their own pills or drinking the powder with water.

https://www.facebook.com/groups/BiotinForProgressiveMS/

In this Facebook group you can find many info and also some info about places to order.
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Re: MS mom needs medicine

Postby Hedaya » Mon Jun 22, 2015 7:48 am

Thank you EricDrake for the information.
I have joined the group and will search for this and see how we can get this powder for mom.
Hedaya
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