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Mohammad77

Member
Joined
Jan 12, 2010
Messages
26
Reason
Loved one DX
Diagnosis
01/2009
Country
PK
State
Capital
City
Islamabad
Hi, This is my first post here. I had been viewing this forum for some time now for answers and cure or any type of treatment. I didn’t know what to say or how to comfort as I was needing the comfort my self.

Any way A little history, I am from Pakistan. My father (56) was diagnosed With PBP MND beginning of last year 2008. We tried everything possible there to treat him and he become worse and worse in three months time he started chocking on food, we couldn’t understand what he said, Then we took him to Bangkok for a second opinion in June alas he was diagnosed with the same and the doctors just recommended Rilutek (riluzole) for increase in life span and asked us to prepare for the worst soon around six months or so. As a middle class family from Pakistan affording that medicine is like a whole month’s salary.

So he went back disappointed and I started to look for alternatives, The best I could find was stem cell took 2 months to come to a conclusion that we should go for Xcell in Germany. Cost was so high for us but…I don’t want to go in details point is we didn’t go main reason German embassy rejected my dads visa as god knows that xcell didn’t mention PBP on there website.

Now Till September excessive saliva started to generate and problems started to get worse. So I went for homeopathic medicine. Tried that and no results came from it. Now my father couldn’t swallow at all in October and his conditions where getting worse day by day.

By November he had no movement in his face upper lip shorted, lower lip hanging saliva dripping all over, chin muscles going up towards his left he had a lot of cramps in his neck and didn’t have the power to close this mouth and started to have breathing problems, so I guess you can imagine the picture.

End of November some relative of mine told me there’s a Chinese man in Islamabad doing acupuncture why not try and that hes an authentic acupuncture Doctor and just check it out. So we went to him he saw my father asked him to take out his tongue but my father couldn’t do it didn’t even come to his teeth. So he took his 3 inch needle under my fathers chin for 3 secs my father didn’t feel any pain he took the needle out and then asked my father to stick out his tongue and I couldn’t believe my eyes his tongue came up to his teeth easily. And the Chinese Doc was happy with this he said it is highly possible that my father can be cured and I hope so too.

I asked the doc that how this acupuncture works he told me that it activates the immune system he punctures specific nerves the body system runs to repair it in process repairing the nerves and nervous system. He asked me to stop any medicines hes taking like Rilutek (riluzole) antibiotics etc except for heart and blood pressure meds. He said his nerves system is weak and cant take the meds its just making it worse for him so we have stopped everything as he wants it to naturally heel them.

To date. My father is going to see him 3 times a week for the last 7 weeks, My fathers saliva has become very controlled, his face features are now 80-90% normal his chocking has gone down maybe once in 2 days, but very mild ones, he has stared to swallow better, breathing problems have gone down to 5 mins once in five days, I think he has gained some weight as well. Speech has had little effect I think that’s my fathers fault as he doesn’t do the exercise given by the doc enough, we have to push him a lot to do it,
Best part is he feels better and confident.

This whole thing I wrote is that there is hope and we should try what ever possible means we have there might be something that can work for our loved ones.

Please don’t mind my English I am not so good at it,

I wish for all to get well just be positive, If God closes one door, He also opens hundreds of other doors for us.

Take care all, will keep you updated.
 
Welcome to the forums Mohammad. Sorry for your fathers illness. I have heard of some people getting relief from some symptoms from acupuncture but not as dramatic as your fathers. Please keep us informed of his progress.

AL.
 
Thank you so very much for taking the time to share your Father's story with all of us. I have personally experienced a return to health with traditional acupuncture so I am a believer. Please keep us updated and tell your Father that we wish him the very best. You are a wonderful son.
 
Thank you for sharing that story. I hope your father's symptoms continue this improvement. Please let us know what happens.
 
Thank you all for your support.

To tell you the truth at first I my self was very skeptical about this treatment. In the beginning he didn’t feel pain for the first 4 sessions. But now he says it hurts a lot and the doc says it’s a good sign as his nerves system is responding.

For food, except deep fired stuff we gave him everything as the Chinese doc told us to do, before it took him like almost 3 hours to eat a meal has come down to an hour and 10-15 mins. He still uses his finger to move the food in his mouth as his tongue cant move much side ways, the muscle spasm (if this is the correct term) on his tongue has decreased I think 15 % is still remaining, and the tongue is becoming little thicker. Looks more normal.

Doc said to give him as much nutrition as possible as hes very weak internally, and supplement in Pakistan its called insure 2 table spoon in warm milk twice a day for natural vitamins and proteins.

Stopped him from taking milk tea, and green tea to take as less as possible. According to the doc his nerves system should recover God willing in the next three months, He said now the signals from the brain to nerves is slow to make that better he has to practice and exercise.

From next week he will start on meds of only vitamins B1,B6 which is effective for the nerves system.

He doesn’t do acupuncture like in the movies, only four needles at a session like one in each feet and one in each arm then he messages the face and some presses some pressure point. Then he does the face with 4 needles. Also on his tongue and back of his neck.

I am just happy that at least hes going to an authentic person please be careful of fakes who are trying to rip you off.

Any more things if I recall I will add them at this moment this is it.
 
Hi again,

I remembered one more thing, I asked the Doc about stem cell, he told me that if your nerves are not responsive enough then there will be min results from it. so I am thinking to do it after this treatment. lets see I hope more developments happens in this at least one thing is for sure my father is surly getting more time from acupuncture.

I know this for sure, that it really does help and there are no side-effects to it only benefits if you get the chance do try it.

Best wishes to all
 
How are things this week?
 
I will be updating my dads conditions in 4 days as I am out of the country in for 5 days will update this sunday.
 
Hi all,

The latest till date, my father is going regularly to get acupuncture treatment. At the moment there is no further deterioration in his condition, the progress he was making seems to have slowed down. The spasm on his tongue is almost finished maybe 4-10% at the most is remaining. Not much improvement in his speech yet at all.

He still takes some meds like pain killers and antibiotics which Chinese doc said to stop although he doesn’t feel pain just some other doc told him to take. i Hope he stops taking them.

Did an x-ray scan of his lungs, they where ok (there where prominent scaring on them doc said nothing to fear it might have been pervious infection which has healed) the rib cage is weak doc said to do a bit of exercise for it.

One thing I feel which might be the way to go, I know that stem cell is the answer to this problem the only way for doctors is to find out a way that the new cells don’t get damaged or die out like the original ones. That makes me think that Acupuncture and Stem cell should go side by side. I think it might even increase the benefits for a person receiving stem cells.

Well just a thought.

Ok guys will keep you updated on further developments.

Take care all
 
Thanks for the update
Hopefully he continues to remain at a constant level with improvement to come.

Peter
 
Thank you for your wishes Peter
 
Thank you for the update on your Father! FTI-"exercise" is not good for PALS! Maybe he needs to be on BiPAP? Your English is wonderful :]
 
Hi how are you doing indigosd, he has problems breathing when hes very tired normally onece or twice a week after midnight around 2-3 am he has breathing difficulties from 5 mins to max 20 mins. Then hes all ok the exercise the Chinese Doc asked him to do is to inhale at the same time push the lower part of his stomuch with both hands hold his breath for 3 seconds, then exhale slowly repeat it 3 times daily about 20 times per session.

My english is so,so.. thinking in a different language and then translating it and writing it down again, most of the words get lost in translation.
 
Your English is fine Mohammed. We'll ask for a clarification if we don't understand. Good luck.

AL.
 
Just a little update,

Today my Father eat alot he felt hungry and then went to sleep in the afternoon, which rarely happens now he finished a big dinner. So it was a good day, he said he felt good, I hope this keeps up.


.........................................................

"If you really want to do
something, you’ll find a way; if you
don’t, you’ll find an excuse."
:)
 
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