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A MyMSTeam Member asked a question 💭
Ann Arbor, MI

Hi. Is anyone dealing with Primary Progressive MS? I was diagnosed in 2008, had symptoms since 2002, and perhaps most of my life. My allergies started in my 20s, kerataconus in my 30s, early menopause in my 40s, falls and Raynauds in my 50s, spasms/numbness, wheat sensitivity, eczema, strange rashes, fatigue, and some memory issues in my 60s. Overall, I feel like I’m aging faster than I should be based on my activity and cognitive levels. I’m on no meds, using exercise, semi-healthy diet, rest… read more

November 16, 2014 (edited)
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A MyMSTeam Member

Keeping the inflammation down is the most important besides the balancing diet and exercise. I went on a MS drug when my neuro asked me to try one after getting DX, I was misdiagnosed by another Dr years ago been self treating with herbs. He said they have been keeping me going. But by the time I seen him I already had 12 lesions, after all his tests and verified it was indeed MS I multiplied to 35 they were out of control. I'm still taking my herbs. Have had 2 relapses this year. Not on any pain meds. Just seizure med and Tecfidera.
Herbs for noninflammatory Frankincense, Turmeric, Ginger. For spasms Valerian Root, Reishi Mushroom. For neuropathy Hawthorne Berry, Ginko, cayenne, ginger root and White ginseng. My herbalist puts the pills together for me. I'm blessed my neuro, and primary care both believe in alternative medicines along with pharmaceuticals. Also take vitamin B,D Magnesium and Apple Cider Vinegar. I'm now off of allergy meds, Gerd meds too, no side effects from Tecfidera.

November 18, 2014
A MyMSTeam Member

You sound like you are doing all the right things already. Keeping active is important. Watch what you eat and make sure that what you eat is "feeding" you in all the right and beneficial ways. I too am hoping that my boat (ppms - Dx 4.4.12) is an extraordinarily slow one as well. I supplement like crazy, take LDN, get acupuncture, eat carefully, use essential oils (frankincense and rosemary), exercise, and get my rest when I need to get my rest. Best of luck to you.

November 17, 2014
A MyMSTeam Member

try to keep your dwelling at 73 degrees (optimal temp for all MS patients regardless of type). Also Yoga, Tai chi, and Qi gong are great exercise to slow mental and balance problems

November 16, 2014
A MyMSTeam Member

I have felt older than I am since dx at 18. Supposedly MS has progressed twice in past yr. Having had this for 15 Yrs, I feel I have had PRMS the entire time.

March 10, 2016
A MyMSTeam Member

I discontinued the Tecfidera in April. We found out it was causing a lot of my advanced MS symptoms. I'm happy to say a lot of the symptoms have gone away. My legs are now working again. I have about 65 % of my feelings back in them. I no longer even use a cane let alone a walker. The Dr was about to order me a wheel chair. I now have feeling again in my pelvic and rectal areas. I had been incontinant for over 10 months couldn't even feel myself pee. Heck of it was when I got my feelings back I found out I had a bad UTI. Then kidney stones. I'm able to let my hair grow back out. I've kept it shaved since Nov because of skin lesions. Sores and boil like things on my scalp. They're all gone now. I thank God for returning to me the senses that were gone. I still have sight problems, optical neuritis, cataracts. Another surgery next month. While on Tecfidera I went from 12 lesions to 50 in 10 months. I've been off it for 6 months my last MRI showed no new lesions without MS meds using herbs only. I'm using 500 mgs each in a combo pill Frankincense, Turmeric, Ginger. Ashwagandha, Neuropathy blend, vit D 5000 IU 2 x day, Magnesium, potassium, B12 injection and apple cider vinegar. Plus I eat gluten free, dairy free diet with chicken or fish 2 times a week only.

September 8, 2015

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