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Old 06-01-2008, 06:30 PM   #1
Exnavydiver
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Are there any other MS sufferers in MOC?


Back in 98 I was diagnosed with remitting/relapsing MS. After a lot of background investigation it was determined that I had had it for probably 18 years prior to my diagnosis which means for the last half of my Navy career. Anyway I have it more or less under control with weekly shots of Avonex (Beta Interferon 1A) These shots started out at around 1600 bucks a month for four shots they are now in the 2300 dollar range but Tricare and the VA take care of that depending where we are. My Question is: Are there any other MS patients who are MOC members? I have done tons of research since I was diagnosed and have helped a few new diagnosies through the starting phases. It took me awhile to get used to doing the weekly IM shots (inter muscular) but there also other meds out there that are subcutaneous shots but they are given either daily, every other day, or every three days. If there are others with MS I would like to get in contact with them. Maybe we can help each other.
Heat is one of the worst things for us as it aggravates the MS and helps to bring on flair ups. We moved to to northern Wisconsin to get where it is cooler but after 7 years we couldn't handle any more of the 7 months of "cool". So we go south for the real "cool" and come back for the not so "cool".. Dave

 
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Old 06-02-2008, 05:19 AM   #2
dsprik
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Hi, Dave! I or Cheryl do not have this terrible disease. However, our son-in-law, was called by his doctor on his 25th birthday in Dec 2006 to inform him that the tests were positive for MS. He also is on the weekly shots.

We are still learning about the medications and organizations out there. Jimmy is married to my 23 yr old daughter and they have 5yr old and 3 yr girls.
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Old 06-02-2008, 05:42 AM   #3
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It is kind of ironic that all during my earlier life I only knew two people with MS and they were either in a wheelchair or on canes. Now everybody that finds that I have it I learn that most know somebody with it. It was not as scary for me at first as it is for most folks as when it was first mentioned during the testing I spend the several weeks it took for the tests to study up on it and was prepared for the results either way. When the Dr. looked at my MRI she said "yup, you got it" I had already decided on Avonex instead of any of the other drugs just from the research I had done. The Dr was surprised at the knowledge base I already had on MS. Information is usually the biggest part of this disease is education and seperating fact from fiction. I have only had one flareup since the diagnosis and that was stress related, both my wife's dad and mine passed within two weeks of each other and then I worked a 70 hour week right after and wham, I was down for two weeks. The fatigue was the worst part of the whole thing. Exercise is one of the keys to keeping the beast caged. Swimmingit best and staying away from heat is another, I really miss hot tubs.. Dave
P.S. For those folks that want to keep that info private you can PM me but I think that the more folks that are aware of how many folks this affects. Knowledge is the key. Also if someone is afraid about their job security, don't be, this is a prime example of why the ADA was made law.
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Old 06-02-2008, 04:26 PM   #4
slewis
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Hi Dave, I don't have it but my mother did! She contracted it when she was 40 and died when she was 43 years old(some 40+ years ago). Back then they certainly didn't have the techniques that are in place today. In your extensive research did you learn that MS is genetic? My nephew thinks he may exhibiting symptoms of MS now. He's in his 30's. So glad that those shots are working for you.
Sandy
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Old 06-02-2008, 04:53 PM   #5
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I would suggest that he get to his Dr asap. The sooner they diagnose it the easier it is to treat. It is a strange beast, it mimics many different diseases and diagnosing it is sort of a process of elimination. They usually test for Lupis, then Lymes disease, and on down the line but the two main tests that usually get the diagnosis are an MRI and spinal tap. It will usually show up as white plaques (white spots) in or around the brain, and the tap should show antibodies for MS. The frequency is usually 70% women and 30% men. Usually over forty but it can hit in the teens too. Only found in the industrialized nations in the northern and southern hemispheres. It is virtually unknown around the equator. They are not sure if it is hereditary or not but it does seem to show up more often in family members. As far as we know no one in my family has had it. In my case totally ass kicking fatigue, numbness in my hands and legs and loss of normal balance. The web is a great place to learn about it and all the symptoms are there. Just Google MS and it will all pop up.. Hope that helps.. Dave
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Old 06-03-2008, 02:30 AM   #6
dsprik
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Thanks for all the great info, Dave!
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Old 06-19-2008, 02:58 PM   #7
slewis
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My daughter works with a lady who has MS. This lady has brought her MS under control with diet and exercise. There was an article in our local newspaper about her and the program she is following. Due to the size of this article and the fact that it was scanned for me; I doubt that I can include it here, but if anyone is interested in the article I will be glad to share it with you. With the hope that it will bring someone relief from symptoms without meds.
Sandy
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Old 06-19-2008, 06:23 PM   #8
dsprik
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Sandy, I'm interested. My son-in-law had to stop giving himself the shots. They were making him very sick - flu-like sysmtoms.

If it is scanned, you can probably email me with a Word or PDF attachment?

Dave
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Old 06-19-2008, 07:26 PM   #9
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Sandy
Since my granddaughter (21) was just diagnosed, I have spent literally 100 hours researching. While family history is one theory (no one seems to know for sure), there is also a theory that a virus is involved. Megan's doctor believes it was from the malaria she caught while she was in Africa 5 years ago on a missionary trip with her church. The family history is almost always from a father who has MS that is handed down to his children. No one in our family has had MS. It was believed that my sister had it but then they found a malignant tumor on her spine - this was 30+ years ago so they did not have the tools then they have today. Megan has not had her spinal tap yet as she also just had a baby - which is not unusual for MS to show up during or after pregnancy.
Sue
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Old 06-20-2008, 06:26 AM   #10
slewis
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Here is a website that you both may want to take a look at if you haven't already found it. Get to the site and then
in the search box put in MS. I think this girl/lady that I speak of is affiliated with this site. It is mentioned in the article that I will forward to you, Dave. Apparently there are alot of folks that the medications prescribed do not agree with. Hence, this site seemed to be pretty worthwhile to check out. I hope it will be of help. Sue, my mother had MS as does her sister(my aunt). So far, I've not heard of any others with it in the family. Still don't know about my nephew as mentioned in previous post.

The website for this info is http://www.drmcdougall.com

Sandy
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Old 06-20-2008, 04:22 PM   #11
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During my initial foray into the web in search of Info about MS I found dozens of Alt. Med. sites and a lot of folks have got the beast under control that way. One of the foods they really push is Blue Berries. The chems in them really help. Another of the cause theories is that it may be related to (as you said before) a virus, but they think maybe Measles, Chicken Pox, Mumps and back when I was a kid I had all but mumps and several others. I find it interesting that it seems to stay in the Northern and Southern Hemispheres and away from the equator. As I said before, the first few months the Avonex really kicked my ass, but by the third month the symptoms slacked off a lot and I would always do it on Saturday night so I could sleep through the worst of it that night and if there was any residual I could stay low on Sunday to. My best friend's son had to do a year of Interferon for Melanoma and he had a very hard time for about four months then it got better. Granted what I am taking is Beta-Interferon 1A but it is still an interferon. I always take at least two extra strength Tylenol an hour before the shot and that helps a lot. I hate needles too but sometimes you gotta do what ya gotta do. To date I have done 484 shots and tomorrow will be 485. Some sting, most don't. Sometimes I prang a nerve bundle and that gets my attention. But usually I don't feel a thing. Hang in there, this just another inconvenience in a world full of them... Dave
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