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I've been trapped in a very stressful cycle for the last six years. I was dx with RRMS in 2006. I did Rebif for just over a year. I had a really hard time with the flu-like symptoms, then I had my biggest relapse (vertigo). We were planning to try for pregnancy not long after, so I quit the Rebif in early 2008.
It's now 6 years later and I haven't been on any disease modifiers. Mostly because of a long, difficult struggle with infertility and pregnancy losses (I did have one beautiful kiddo, though!). My neurologist has been patient, gently inquiring at our annual appointment as to whether I plan to go back on the meds. I keep putting it off, hoping for another pregnancy.
I am beginning to panic. I'm 35 and I feel like the other shoe is going to fall. I haven't had any relapses in the last six years.
I have to set a timeline for myself, when I will give up this dream of having another child and get back to caring for my disease.
So my question is, I've missed six years of treatment. Am I too late? Should I even bother? Clear MRIs, no relapses. It's becoming a major source of paranoia and anxiety for me.
If you could direct me to any helpful literature about disease modifying drugs etc., I'd really appreciate it.
Sure sounds like you have decisions to make in the near future.
Problem with MS is that nobody will be able to give you an answer to your question. You've been relapse free for 6 years without being on any meds. You could go another few years without a relapse or you could have one in a week, month or 6 months. You just don't know and that's the frustration with this disease.
Stats show that after a pregnancy there is a higher chance of suffering a relapse likely due to all the hormone changes that take place. During pregnancy, those same hormones appear to suppress MS symptoms. But again, you just don't know.
If you have been relapse free for a long period you may want to continue doing what has worked so far. It's important to eat properly, get sufficient rest, exercise correctly and take any supplements you may have a shortage of in your system. Keep away from stress as much as possible and consult with your doctor immediately if there are any major changes in your health.
I've been trapped in a very stressful cycle for the last six years. I was dx with RRMS in 2006. I did Rebif for just over a year. I had a really hard time with the flu-like symptoms, then I had my biggest relapse (vertigo). We were planning to try for pregnancy not long after, so I quit the Rebif in early 2008.
It's now 6 years later and I haven't been on any disease modifiers. Mostly because of a long, difficult struggle with infertility and pregnancy losses (I did have one beautiful kiddo, though!). My neurologist has been patient, gently inquiring at our annual appointment as to whether I plan to go back on the meds. I keep putting it off, hoping for another pregnancy.
I am beginning to panic. I'm 35 and I feel like the other shoe is going to fall. I haven't had any relapses in the last six years.
I have to set a timeline for myself, when I will give up this dream of having another child and get back to caring for my disease.
So my question is, I've missed six years of treatment. Am I too late? Should I even bother? Clear MRIs, no relapses. It's becoming a major source of paranoia and anxiety for me.
If you could direct me to any helpful literature about disease modifying drugs etc., I'd really appreciate it.
Thanks!
I cannot direct you to info on the disease modifying drugs, but I take the liberty of suggesting that you watch the following video:
"Everything You Want Your Doctor to Know about Vitamin B12"
I highly recommend this 50-minute documentary featuring Sally Pacholok, RN, BSN & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).
@1:23 "The neurological manifestations well precede the hematological manifestations."
@1:46 "In 1948 scientists isolated a red crystalline pigment and named it vitamin B12. It is a primordial molecule responsible for the health of all the DNA in all our cells. The Framingham Offspring Study suggests 40% of Americans have suboptimal B12."
I hope your GP, OB/GYN, or even your neurologist has tested you for a possible B12 deficiency, since infertility and miscarriages have been linked to it. (By the way, the book mentioned above tells of links of autistic children being born to B12 deficient mothers.) Initial testing begins with simple blood tests: #1 serum B12 test, #2 serum folic acid test, #3 serum homocysteine test, and #4 serum methylmalonic acid test (although I have heard that the urinary methylmalonic acid test is more accurate).
If you are found to have a deficiency, it is easy and inexpensive to treat.
As for taking any MS medications, my feeling is that if you have had no relapses in the six years WITHOUT medication, there is no reason to take them now. In my opinion, there is not adequate evidence that any MS medication is effective.
Somehow your life habits seem to work. I wouldn't change anything and I would stay off medication. You must have noticed that all available drugs are "disease modifying" or "deasease treatment" ones. Nor cure.The side effects are depending on everybody's different body and mind specifics (not known beforehand). So, nobody can guarantee that starting a medication protocol you will continue to be relapse free. Do not forget the saying "do not change a winning recipe". The only thing I would disagree in your life habits, is the anxiety part. Since nobody can predict the future, it is not logical to feel anxious about it. Try to rationalize that and relax. Continue with your life calmly and enjoy every moment of the greatest gift of all. Life.
Hi Punchy,
Here are some articles I hope you will find helpful. http://www.ctvnews.ca/health/ms-treatme ... z20upUkXQL http://commonhealth.wbur.org/2012/08/pa ... the-doctor http://www.nytimes.com/2012/07/18/healt ... .html?_r=3
I agree with kostas (for myself) "stay off medication". It was 17 yrs. from my first symptom(double vision) until I was finally diagnosed
in 1993. I'm so thankful that I was not on those drugs in that time. Then for ten more years I turned down the m.s. drugs.
Finally I let my neuro talk me into starting one then another. I tried three in 5yrs. They made me too sick so I decided to stop taking them and even with the drugs, my m.s. did what it wanted to do.
I wasted 5yrs. fretting over m.s. drugs. Now I take only ldn, my miracle drug. A friend insisted for one year that I at least try it. I wish you all the best in your decision making.
Punchy,
Here's another video I found very interesting. This one is about ldn but the woman interviewed has m.s. and shares her
experience with the m.s. drugs neuros prescribe.
The decision to take any drug, MS or not, should be based on the side effects vs. the benefits. I take Copaxone, LDN, supplements and lifestyle modifications (diet, exercise) because there are no really no side effects to any of them. At least for me. If you are doing fine without the drugs and you had bad reactions previously maybe stay off them and take a wait and see approach. Or if your insurance covers it try Tecifidera as it has minimal side effects and a higher efficacy than the injections.
Personally, I am willing to do just about anything to stay ahead of this illness. I have a young family as well and that is my priority.
