autoimmune challenges, being my best in 2015

mimarg

I have a diagnosis of MS. I'm 50 pounds overweight and a little over two years ago I dropped "betaseron"
From my treatments. I had no new lesions for over ten years. I started investigating what I could do differently. I've been successful with the exception of weight loss. I do not profess any medical knowledge, only my experience that has helped me choose a better way...please join me if you think you could share this journey. It really is for ALL autoimmune diseases...we have many medications, and treatments, and specialists in common. Not everything is MS...what do you think???

ilovemypeekapug

Hi! I was diagnosed with MS in 2009. I was on Rebif and Amantadine (for fatigue) for a few years, then quit to get pregnant. After my son turned one, I went back on Rebif and gained 18 pounds pretty quickly and had horrible side effects! Not sure why it affected me so differently after taking the break from it. I have been on NO meds since September, and have an appointment in March with my Neuro to discuss Tysabri infusions and something for fatigue that I don't have to take daily. I have been feeling pretty good. No new lesions on my last MRI (which I am due for this spring), but my husband and I decided I should get back on something to prevent relapses in the future. Great that you have not had new lesions for 10+ years! Awesome! I need to lose 34 pounds to get to a healthy BMI, which is my goal. Definitely won't be a bikini body, but I know I felt better when I weighed less. So, are you on any meds now? I was thinking about just doing MRI's and monitoring for new lesions, but my husband is very concerned that the next relapse I have, I won't recover. The last one caused me to miss 5 weeks of work and go through PT/OT/ home steroid infusions, couldn't walk without a walker and even that was challenging. Took 2 years to get back to completely feeling "normal". I do NOT want to go there again!

DsAdvocate

I have MS too but paediatric onset. Unfortunately my disease is aggressive, I had a couple years on Tysabri with no new lesions but that's it. I've been on Rebif, Avonex, Betaseron. Was the 6th person in Canada to start Tysabri and the 34th to start Gilenya. Nasty disease.

I'd love to talk to others with the disease as there's no one close to me that has it. It would be nice to have someone that understands.

Spreyton22K

Congratulations on taking control of your condition enough to investigate different strategies to help you.

The road with chronic illness can be challenging and tiring, but not impossible. I have Lupus along with other conditions that effect my health because of it as well as and entirely seperate issue of a chronic systemic pain condition called RSD.

Rsd has been a part of my life since an accident in 1997....I have been medicated to within an inch of my sanity and capacity to cope. Most of the time the help was transient. For me I felt that the tide started to change when I said no more experimentation and started the LONG road to weight loss and supportive emotional help to deal with living like this.

I weighed 124 kgs (268 lbs) and over 2 years worked hard but without unrealistic expectations of miracle transformations and am now in successful maintainence for nearly 2 years at 110 lbs.

The Lupus was a new broadside and new meds diagnosed early 2014, lots of head scratching and the inner turmoil you have to wade through to find yourself again after another setback.

Well there's me, hope I haven't bored you. I guess my wish for you is that you embrace the notion that nothing is impossible, weight loss will come.....maybe slower and you may have to do some tweaking not in the normal sense of the MFP style to get results, but I sense you are a brave woman who is determined to come out victorious and this will see you go far.

Hope your proposed group flourishes.

RodaRose

Yoga helps me tremendously. Also breathing techniques. And for a few years when I could afford it: acupuncture.
If you do not like yoga, try Tai Chi.

hgoldbet

Hi I also have RSD/CRPS and have spent the last year slowly recovering after finally getting a diagnosis and treatment following two years of increasing pain. Water aerobics, biking, and now walking are helping a lot. I feel very fortunate to be recovering and moving in the right direction. I would like to talk to others who have experienced this.

Vune

I have a friend who manages his ms with a strictish vegan diet and many hours of meditation. And that wonderful, newfangled treatment they call marijuana. Another friend can hardly move without her suitcase full of meds.

I don't have an autoimmune disease, but I do have a rare disease. After years of taking dozens of different medications and feeling awful, I'm trying to take the route of my first friend up there. Or, rather, find a balance that's good for me, since I have a kidney transplant and will need meds for life. If I can manage to not need medications for the migraines, the bipolar disorder, the chronic gastritis, and all the other annoyances that my doctors say are just a part of being me, I might actually get to live life instead of having "not dying" be my full time job.

Feel free to add me, anyone. Especially if you're sick of being your doctor's pet project.