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Pakistans with Multiple Sclerosis

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    Pakistans with Multiple Sclerosis

    Does anybody know any pakistani/indian people who are diagnosed with MS?

    I did not think it was disease suffered by the people of the indian- sub continent.


    #2
    Yes Punjabi my uncle was diagnosed with MS last year when he came over to the USA. It is still a rare disease in the subcontinent, restricted only to laborers. You can read more about on www.webmd.com.

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      #3
      Thanks for your response kaka malang

      Is your uncle still physically active? Is he on treatment?

      Someone close to me has been diagnosed with this condition. He is only 27 and lives in the UK and a professional.

      He is currently ok but I have been reading articles which suggest he could become wheelchair bound. There is no treament for this condtion in the west however I was wondering if people knew of alternative therapy that may have helped their family and friends with this condtion.

      Any advise appreciated

      Thankyou

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        #4
        Yes I have.I have seen a teenager girl from interior Sindh,admitted to civil hospital karachi,diagnosed as a case of Multipls Sclerosis,while i was attending my ward postings there.

        You are very right,it is a very rare disease in Pakistan.According to our teacher these kind of cases rarely come to notice in Pak.She was in a very miserable condition
        I can still remember her very well!

        U must have done some important reading about the disease.There is no proper treatment for this disease unfortunately uptil yet.We keep the patients mostly on symptomatic management.


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          #5
          Originally posted by *kashish*:
          Yes I have.I have seen a teenager girl from interior Sindh,admitted to civil hospital karachi,diagnosed as a case of Multipls Sclerosis,while i was attending my ward postings there.

          You are very right,it is a very rare disease in Pakistan.According to our teacher these kind of cases rarely come to notice in Pak.She was in a very miserable condition
          I can still remember her very well!

          U must have done some important reading about the disease.There is no proper treatment for this disease unfortunately uptil yet.We keep the patients mostly on symptomatic management.

          Punjabi most of u say is correct,& also Kashis.
          For some reason it is common in lattitude of the globe which does not touch our country.But some similar type of progressive paralysis happens in indo pak due to latheriasis ,india specific disease caused by eating 'Khesari dal'.That is why u said in labourer b/c it is cheapest dal for poor.

          M.S. tha is relatively common in northern part of usa washington state to maine which would be in same lattitude to u.k .It is as rare as in indo pak if you go south to florida texas,southern california & all states in south.

          I know couple of immigrant girl from pakistan suffer from M.S. all in norhern u,s.a chicago ,seattle,windsor canada.
          Dont lose hope.In early stage it is not that bad.There are newer drugs in west to delay proigress but like cancer chemotherapy are very toxic.Besides care of disabled in America after 91 american with disability act called ada 91 the MANAGEMENT is best eventhough you might say 'no cure'disheartenedly.But most diseases are incurable but managed well e.g diabetes ,b.p.>heart disease u name it .Dieases can be cured but not destiny.Good luck to your young 27 yr. uncle.When the going get tough ,tough get going

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            #6
            Hirthik what you said about being in the certain latitude area is correct.
            We have been told that even though the disease is not common in indo pak however slowly numbers are increasing in indo pak individuals who reside along certain latidude areas beofore puberty.


            With regards to medication I have done all my literature search and yes one can slow progression via medication however in the uk you are not given medication until the later stages which I think is pretty stupid. Why not give it in the early stages as in the states. We shall try once more with the neurologist here and if ther's no luck we shall have to try way's of getting from the USA.

            You're right hrithik there is no cure but management only.

            Now we think if we hadn't migrated here maybe this wouldn't have happened. All is in God's hands at the end of the day.

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              #7
              Somebody very close to me suffers from from MS. He was diagnosed with it when he was 18 years old, whereas if you look at the statistics MS is very rare in the teenage years, usually strikes between mid thirties to 40`s.

              It is due to many things e.g environment, diet etc. It is also prevalent more in the western hemisphere due to there being alot more environmental pollution and alot more people neglecting themselves. In our countries The environment is more natural and the air is alot cleaner and people have a very healthy diet, especially those in the villages. I feel climate plays a very large role as when this relative of mine went to pakistan with his parents he actually regained some control over his body, however after coming back here he declined again.

              We can only pray for people who suffer these types of diseases as there is no cure at the moment. In America however they had tested a drug on people who had just been diagnosed with MS and in some cases it gave the person a certain amount of control over their body and in some cases it just totally failed. This was a few years ago however. At the moment is is still trial and error.

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                #8
                At ths moment in time I suppose there is no better cure than praying. It works wonders better than any medicine.

                How old is your relative?
                Has he detiorated rapidly after diagnosis.
                I pray to that your relative gets better.

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                  #9
                  Punjabi thanks very much,

                  He is now 31, therefore been suffering for 12-13 years.

                  The thing with him was that he just couldnt take it, instead of fighting it he just went into depression and therefore rapidly deteriorated.

                  He had just finished A levels and was going on to do Pharmacy when we were told the bad news.

                  But God knows best.

                  You asked about alternative therapy, and i shall tell you that his parents went absolutely everywhere, here in the UK and Pakistan, from mullahs to chinese herbalists who all "claimed" they could cure him. However nothing worked and it wont, reason being that as it is a disease that attacks the nervous system, it wears away the protective covering of nerves and muscles thus weakening its host. The only way to try and get better is strengthen your own body in order to fight it. This means totally changing your diet, plenty of exercise which will keep your muscles strong. There are many books which recommend certain types of food, but they dont work with everyone. You have to monitor the person yourself, make notes of what they have eaten and what effect it has had on them. There are also claims that cannabis has a good effect on MS sufferers
                  http://www.amazon.com/exec/obidos/ts...409686-4900062

                  Many MS sufferers also go into remission, which means the disease stops attacking them and they seem to get "normal" again, however this again happens to some, not all and that person is very lucky for whom it lasts.

                  A final thing Punjabi is that I really hope this person who is close to you does fight it and not give up. It takes alot of courage for a person firslty to face the fact that he/she has it. This person needs all the emotional support you can give him because those who dont suffer from this type of illness, never will know what thoughts go through the minds of the sufferers.

                  [This message has been edited by Mariah (edited September 04, 2000).]

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                    #10
                    PunjabiG, the best thing you can do is get in touch with a larger society like the MS Society of America if you are here in america. These organizations are extremely helpful in getting out factful information to families and friends. Your next best bet is your friend - i think it was mentioned that he had given up himself and succombed to depression, etc. that itself needs to be addressed and not just ignored. Depression is a real illness that can be treated and should not be allowed to just be ignored as it will affect how his body will react. There is a lot of patient and family/friend education needed in this area of how much our mind and bodies interact and affect each area and your friend would be doing himnself a great disservice by just giving in to depression and to his MS. I have worked with patients (I'm an occupational therapist) in similar situations and their whole mind set plays a big part in their recovery or not.
                    True there is no cure for MS, but there are medical advances made daily and your friend needs to realize that he is responsible for his own health's upkeep or rather a good portion of it on a daily basis. No one else can say how he is feeling quite as well as he can and no one else can say how much he can or can't do on a particular day. Btw, a good OT would help in the sense of helping with work simplifying techniques so as to remain as independent as possible - having the ability to keep doing as much as possible for yourself even if it does take longer, does wonders for your self-esteem, and those around your friend need to realize that always doing for him may not be the best for HIM. At any rate, try to build up as much of a support system for your friend as you can. I know that families mean well, but sometimes, finding others in similar situations really helps - so mybe finding a MS support group might be helpful. I know as a culture, we pakistanis are reluctant to go out and talk about these things or our problems to others, but sometimes that is what we need - especially with chronic conditions - sometimes talking to others in similar situations helps us come up with solutions to problems we may have or together we can brainstorm, etc. It is good that you are really concerned and his family seem really concerned too, and that is real good for himbut if he has given up, then perhaps, consider trying some other suppport systems. Good luck.

                    In going back and re-reading above posts, I have to apologize as I seem to have gotten confused with whose friend with MS had given up...so I'm sorry, didn't mean to offend PunjabiG since this was addressed to them (or anyone else for that matter, I believe it was another person's friend who had given up when he found out he'd been diagnosed with MS) At any rate, advice is still reasonable, sorry I had the people mixed up!!

                    [This message has been edited by AuntiG (edited September 04, 2000).]

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                      #11
                      Its a disease of temperate zones. seen mostly in Cold and wet climatatic locations.

                      The disease itself is a relapsing and remitting type of ailment, meaning the patient for example complains of unexplained blindness for a day or two then becomes normal, only after a few months or years the symptoms reappear.

                      It is interesting to now that people who had measles in their childhood or had measles vaccination rarely develop MS. Couple of years back, I met a neurologist in Maryland, according to him, the disease is rising drastically, every week he diagnose 3 to 4 new cases. - thatís horrifying though.

                      Recently I was going through a research study - it says something about artificial sweeteners. ASPARTAME marketed as 'NutraSweet', 'Equal', and 'Spoonful" which is used as a sugar substitute in Diet products like Diet Coke and Diet Pepsi gums, candies etc, is reported to be a cause of multiple sclerosis and systemic lupus epidemic in North America.

                      Well people say that there is no cure, I donít believe in that. My Allah has made shifa for every disease. Inshallah I will find one for this too.

                      Psssst! Kashish? In which year you graduated? My cuz is also a dowite, she is of I think 93 or 94 class. May be you know her.


                      [This message has been edited by [ nanga ] (edited September 05, 2000).]

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                        #12
                        AuntiG,

                        Maybe you were replying to my post. Anyway I would just like to say that he was part of an MS organisation during the early years of his illness, however I think it just hit him too hard you know, he just couldnt take it. He was a really popular guy before the illness and like slowly slowly all his friends stopped visiting and all he had was his family and believe me they supported him as much as they could, but he just went downhill. He has now been in a wheel chair for about 7 years and has no control over his body what so ever....

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                          #13
                          Originally posted by punjabi:
                          Hirthik what you said about being in the certain latitude area is correct.
                          We have been told that even though the disease is not common in indo pak however slowly numbers are increasing in indo pak individuals who reside along certain latidude areas beofore puberty.


                          With regards to medication I have done all my literature search and yes one can slow progression via medication however in the uk you are not given medication until the later stages which I think is pretty stupid. Why not give it in the early stages as in the states. We shall try once more with the neurologist here and if ther's no luck we shall have to try way's of getting from the USA.

                          You're right hrithik there is no cure but management only.

                          Now we think if we hadn't migrated here maybe this wouldn't have happened. All is in God's hands at the end of the day.
                          Thanx,for reading my reply.All i can say NO TWO CASES ARE SAME ,so what you hear the worse sceneio might not happen to all.Keep yours & uncle's attitude positive& for good reason b/c if you expect the worse you are more likely statistically to CAUSE it.The reason being what they call PSYCHO NEURO IMMuNOLOGY.The way our mind is happy vheerful confident optimstic it is reflected in our immune system which is one of the factyor in Multiple sclerosis,i.e. our immune system attack the nerves in a self inflicting suicidal action instead of fighting foreigners(bacteria virus )invading our body.
                          The medication that u know is given in u.k in late cases are like chemotherapy in cancer.It also causes severe side effects of loss of hair,bone ,marrow supression vomiting,anorexia etc etc.It is not a sure shot in fact it is a desperate measure thats why in u.k. where money comes fromgovt. they have to ration there resources to more shure shot treatments rather than experimental.I guess you can try in private clinics in u,k through non human serviceses of u.k govt.
                          i m sorry there is not much more that i could help u with.

                          Comment


                            #14
                            Thankyou everyone for your response.

                            Don't worry aunty ji u have not offended me.
                            Its nice to see people care enough.

                            The person in question is my one and only brother.

                            He is a fighter and inshallah I pray to God he fights it all the way. So far we are grateful to God that he is relapsing and remitting.
                            However he is also in denial.
                            It is me who seems to be looking up all the info.

                            Mariah my parents are very similar in that they are willing to try every thing and anything.
                            However how to you persuade an individual who dosen't want to know.
                            I have obtained quite a bit of info but he won't bother (He's a pharmacist and thinks he knows all that is req- He's sweeping the problem under the carpet and won't talk about it)
                            I wanted him to start therapy early as they do in the states. The side effects far outweigh the benefits

                            Yes Mariah and aunti ji he does exercise very regularly, and he is completely independent.

                            Hrithik its so true what you've said about it progressing psycho-somatically.
                            I can see it in him when he is worried, depressed he has an attack and when he's on a high he's ok.

                            The reason I wanted to air this condition on gup shup was because we thought we were on our own as asians.
                            I am in contact with a couple of MS societies however there seeems to be no asians belonging to them.
                            My parents are from the scool of thought where they suffer alone and will not discuss the issue however are running everywhere for cures.
                            I on the other hand look for info advice etc

                            Thakyou again everyone for your advice

                            Mariah r u in the UK. Why wasn't your uncle given interferon-slows progression.

                            Mariah I pray to God your uncle gets better. I believe everything is possible with GOd.

                            If you wish mariah u can e mail me at [email protected].

                            Comment


                              #15
                              Punjabi, you are really bringing back memories for me. You know what it wasnt my uncle it is my eldest brother also who i practically worshipped, and I still do. Your brothers attitude reminds me of his so much. I was only about 11-12 when it happened so I wasnt too sure about things my self, all I could see was my brother disintegrating before my eyes and he wouldnt accept any form of help....at the time there wasnt anything like interferon as you have decribed, in the uk it is much more difficult to get hold of these types of drugs.

                              Anyway punjabi I shall inshallah mail you soon.

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