So are we all continuing with our Interferon Shots?

[BigA]

Everyone agrees?? Lol, you better duck after you suggest there might be a genetic relationship with MS around these parts.

Wow, my english must be rusty. There are tests being performed/data being collected to see if there are genetic markers to see who responds to interferons. Right now, the only way to know if a drug will "work" for you, is to try it and see after a few months. In the future, it is hoped to see if someone is a responder or not.

Here's the study: http://clinicaltrials.gov/ct2/show/NCT00325988

[Jules A]

Wow, my english must be rusty. ]

No, not rusty English but maybe just a little too concrete?

I was only trying to make a joke.

[BigA]

No, not rusty English but maybe just a little too concrete?

I was only trying to make a joke.

Ah, humor, arr arr

Yes, i suppose my humor cortex has been somewhat compromised from the disease.

[Tawanda]

Genome study

Wow, my english must be rusty. There are tests being performed/data being collected to see if there are genetic markers to see who responds to interferons. Right now, the only way to know if a drug will "work" for you, is to try it and see after a few months. In the future, it is hoped to see if someone is a responder or not.

Here's the study: http://clinicaltrials.gov/ct2/show/NCT00325988

I get what Jules was saying...I was not very popular in the Ladies Room section of this forum because of my answers to the, "Should I have a baby even though I have M.S.?" threads. Having M.S. just like my Mom and 3 first cousins made it too difficult not to post that genetics should be a VERY serious consideration and perhaps adoption would be a safer alternative to passing down th MonSter to your kid. I always felt that these posters had already made up their minds anyway, so my .02 was not exactly embraced.

The general board is a much safer place to report and discuss the latest findings regarding these ugly genes that lead to M.S. My family is known as an M.S. Cluster Family and one of many being studied by the UofSF.

[BigA]

Actually, I'm drawing a complete blank here. Is there some controversy about genes and MS? I'd not heard that one. could you whisper it to me? Is it bad to say genes are involved in MS (which, btw I didn't say, I was talking about response to meds) but is that controversial?

This is getting interesting. I feel I'm getting to some dark secret about this board back from the "Genetic Wars", long before I became a member.

[Jules A]

Actually, I'm drawing a complete blank here. Is there some controversy about genes and MS? I'd not heard that one. could you whisper it to me? Is it bad to say genes are involved in MS (which, btw I didn't say, I was talking about response to meds) but is that controversial?

This is getting interesting. I feel I'm getting to some dark secret about this board back from the "Genetic Wars", long before I became a member.

Yeah my play on words was referring to the exaggerated objections when I or someone else has the audacity to suggest the genetic aspect of MS should be considered during family planning. Unfortunately I usually am also so politically incorrect as to mention the financial implications of not only our disease with its precarious long term employment aspects but the cost of raising children.

Like Tawanda mentioned the only thing I can figure is they really only wanted the ever popular cyber hugs and have made up their mind before they post the question about whether or not they should have bio children. While I get the sentiment that "MS has taken so much I'm not letting it take any more from me" I'm not convinced that is practical especially when considering something so monumental.

In any event another topic for another day.

[Spydre]

Truthfully, for me, the time I was on interferon (Avonex) it had no effect - at least it seemed that way. This was in the beginning of my disease progression which in the whole 6 months I had been showing symptoms seemed to indicate six months between flares. I continued with the six months between flares until I was taken off Avonex and put on Copaxone. But my change was over a quality of life issue - the flu like symptoms that usually go away around twelve weeks of treatment....never went away with me. I would spend half of my week sick.

[onlyairfare]

I see your point. But for me, I'd rather be playing tennis. Be a mom and look after my 6 year old. Fly to Vegas on the weekends. My life is too short and precious to be completely disabled while on meds like i was for something that may or may not be working. Everyone's quality of life standards are different. For me, going off meds was the best decision of my life.

I was never on interferons, just Copaxone, but I took C and traveled a lot (including weekends in Vegas), and parented 3 kids, so I don't think taking DMDs is incompatible with those activities. Pretty clear on this thread though that many people have disabling side effects from interferons. That is probably why my first neuro prescribed Copaxone to begin with. None of this "Study the drugs and tell me what you want to do," he just wrote the Copaxone script, as he knew my lifestyle wouldn't accommodate being sick 2 -3 days from my DMD.

I almost didn't look at this thread because I was never on interferons, but it is interesting. I will try to find the JAMA article in our library and look at it. The study is large (almost 900 patients) but is that really enough, given that MS has so many variations?

I am now labeled "benign MS" because I have had it more than 15 years and I still have a low EDSS score. I suspect I have a different disease (even if it is labeled the same - "MS") than someone who has frequent relapses and declines rapidly. I can see how a study would average out "no effect" if some subjects had a mild case (they would do well anyway) and others were more severe (they had fewer relapses but still progressed).

As far as the genetics, I don't think there is any doubt of a genetic factor in MS. Consider that identical twins have the same genetic material and if one twin has MS, then one-quarter to one-third of the time the second twin will have MS. Among non-identical-twin siblings, there is only 1% - 3% chance of MS.

If I were in a "cluster family" like Tawanda, I probably would not have chosen to have children. But with "benign MS" (of course I didn't know that at the time) and doing well 10 years into MS dx, and being told my kids' chance of MS was only 1% (that was the data back then), I have 3 kids.

Just another reminder that each of us is different, even though we allegedly have the same disease.

[Tawanda]

I was never on interferons, just Copaxone, but I took C and traveled a lot (including weekends in Vegas), and parented 3 kids, so I don't think taking DMDs is incompatible with those activities. Pretty clear on this thread though that many people have disabling side effects from interferons. That is probably why my first neuro prescribed Copaxone to begin with. None of this "Study the drugs and tell me what you want to do," he just wrote the Copaxone script, as he knew my lifestyle wouldn't accommodate being sick 2 -3 days from my DMD.

I almost didn't look at this thread because I was never on interferons, but it is interesting. I will try to find the JAMA article in our library and look at it. The study is large (almost 900 patients) but is that really enough, given that MS has so many variations?

I am now labeled "benign MS" because I have had it more than 15 years and I still have a low EDSS score. I suspect I have a different disease (even if it is labeled the same - "MS") than someone who has frequent relapses and declines rapidly. I can see how a study would average out "no effect" if some subjects had a mild case (they would do well anyway) and others were more severe (they had fewer relapses but still progressed).

As far as the genetics, I don't think there is any doubt of a genetic factor in MS. Consider that identical twins have the same genetic material and if one twin has MS, then one-quarter to one-third of the time the second twin will have MS. Among non-identical-twin siblings, there is only 1% - 3% chance of MS.

If I were in a "cluster family" like Tawanda, I probably would not have chosen to have children. But with "benign MS" (of course I didn't know that at the time) and doing well 10 years into MS dx, and being told my kids' chance of MS was only 1% (that was the data back then), I have 3 kids.

Just another reminder that each of us is different, even though we allegedly have the same disease.

I was benign...until I wasn't. I has a baby before I had M.S. We were not a M.S. cluster family until we were! When my mother had M.S., dad went to a library to find out what it was...today I like can play, "Stump the Neurologist" with the best of them.! But I agree with Jules, another time....

[BigA]

I was benign...until I wasn't. I has a baby before I had M.S. We were not a M.S. cluster family until we were! When my mother had M.S., dad went to a library to find out what it was...today I like can play, "Stump the Neurologist" with the best of them.! But I agree with Jules, another time....

Why does it keep disappearing? I'm trying to figure out if it's some MS related un-coordination or not. I'll be typing and then suddenly I'm on a different page.

I just figured it out! I'm hitting the Alt key. I think it is a little MS related, finger proprioception... I will have to type more deliberately...

Anyway... how do you play "Stump the Neurologist" when they know everything there is to know?

[onlyairfare]

I was benign...until I wasn't. I has a baby before I had M.S. We were not a M.S. cluster family until we were! When my mother had M.S., dad went to a library to find out what it was...today I like can play, "Stump the Neurologist" with the best of them.! But I agree with Jules, another time....

I agree, you're benign MS until you aren't. I was fortunate enough to have some unusual features in my family, namely a grandfather interested in geneology who researched our family history in detail. No MS going back several hundred years. Because I had other complications of pregnancy, I had elaborate perinatology evaluation including genetics studies - all negative.

I am preparing to start on DMD's again - different insurance, it's now affordable - because I am aware that I can worsen at any time. And if my neuro said "interferons," I'd probably go for it.

I did look in our library for the JAMA article from UBC on the failure of interferons, and can't find it. I found the issues from July 25, August 1 and August 8. I must be missing something!

[Jules A]

I did look in our library for the JAMA article from UBC on the failure of interferons, and can't find it. I found the issues from July 25, August 1 and August 8. I must be missing something!

JAMA, July 18, 2012—Vol 308, No. 3
Email me if you don't have any luck.

[Thinkimjob]

Friend's daughter, aged 28, was told by her neuro to do two years of Tysabri, and 'then have as many children as you can.' He thinks the pregnancy hormones are good for stopping flares and progression.

My gynaecologist, years ago, when pregnancy was still possible, and I was still reasonably 'benign', quietly showed me a mother and a running rampant toddler in her waiting room. She didn't need to say anything.

I don't know enough about genetics and MS to really comment. No one else, so far as I know, in my family has had MS, but half of them are Dutch, and we haven't met back further than my grandparents.

I'm glad, and sad, that I never had to make the choice. We're not a very fertile family, (lots of only children after years of trying), and I certainly wouldn't be lining up for IVF.

[Tawanda]

Why does it keep disappearing? I'm trying to figure out if it's some MS related un-coordination or not. I'll be typing and then suddenly I'm on a different page.

I just figured it out! I'm hitting the Alt key. I think it is a little MS related, finger proprioception... I will have to type more deliberately...

Anyway... how do you play "Stump the Neurologist" when they know everything there is to know?

Actually, I find my M.S. Specialist to be both knowledgeable and humble at the same time. Of course he has the alphabet listed next to his name on his diploma, but that can't replace first-hand experience as a real person with M.S. who was formerly a caregiver to her mother with M.S. from birth until my dear mother passed from M.S. related causes when I was a mere 8 years old. I think of my doctor and I as collaberators more than doctor and patient. Even if I didn't have this rash of M.S. in my family, I would advice any M.S. patient to be their own healthcare advocate no matter how many "smarticles" we perceive our neurologist to "own". This disease is up for grabs as far as opinions go. I think we all have a voice in this and need not cowtow (sp?) to the docs.

[Tawanda]

Friend's daughter, aged 28, was told by her neuro to do two years of Tysabri, and 'then have as many children as you can.' He thinks the pregnancy hormones are good for stopping flares and progression.

My gynaecologist, years ago, when pregnancy was still possible, and I was still reasonably 'benign', quietly showed me a mother and a running rampant toddler in her waiting room. She didn't need to say anything.

I don't know enough about genetics and MS to really comment. No one else, so far as I know, in my family has had MS, but half of them are Dutch, and we haven't met back further than my grandparents.

I'm glad, and sad, that I never had to make the choice. We're not a very fertile family, (lots of only children after years of trying), and I certainly wouldn't be lining up for IVF.

I hear you, dear. My DD was born before all the "outbreaks" in my family were exposed. I was 37 when she was born, and happy to have her at my "advanced maternal age". I would have gone all out to have another one before I hit 40 if I hadn't been diagnosed with M.S. All of a sudden I realized the reality of my situation. 3 first cousins, all on my Mother's side, had already been diagnosed with M.S. and I simply kept my head in the sand. After I was diagnosed, I lost my happy go lucky attitude, crossed my fingers, and now pray for the best for my DD. If I could take on every pain she ever has in life, I would! I pay lots of attention to genome studies as much as they bum me out, and eventually realized that with my family's history, I had to become a part of the M.S. data pool.

My Mom was a first generation American. I wonder if there are relatives in Germany who also are members of our yucky club that nobody wants to be a member of and have attempted to research my German family tree to no avail. I am not the first family member to attempt such research. I had an "Uncle Adolph" who died when he was only 3, but he was named during the WWII era which could explain our difficulty in gaining any information past the past 2 generations living in America. My Mom's surviving brothers and sisters were kept in the dark as well, so if I have M.S. relatives outside of this country, I will never know, but is not outside the realm of possibility. It wouldn't suprise me based on the similarty in climate and longitude lines we share with Germany.

In any event. Many of us pwMS have children. My immediate circle of friends tell me not to worry. They tell me by the time my girl hits the age of M.S. dxs (I, myself was "middle-aged" when my bod went belly-up), there will be a cure. I am thinking not. The wheels are turning too slowly and at this time and place, the funding is just not there.

Thanks for hearing me out. I am not at all trying to rain on anyone's parade, but I just want to share what my experience has been, because I don't think I will stay unique for long...as much as I wish I would.