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Joined: Sep 2001
Posts: 2,192
Major_AS_Kicker
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Major_AS_Kicker
Joined: Sep 2001
Posts: 2,192 |
Hi Cindy,
I do have MS and AS. My neurologist told me she can't tell me for sure which symptoms are from MS and which symptoms are from AS. She said I do have MS all three tests they did came back positive for MS. That said I can still run. After the last MS attach about 2 and 1/2 years ago my running speed dropped (not that I am fast anyway). I am working to get that back.
I give my self a Avonex shot once a week. I don't like it, about 2 hours after the shot I start to feel sick. I feel wiped out for 24 hours after that. It has not been as bad the last couple of weeks. I was going to ask the doctor if I could quit taking it, but I went to an MS meeting where the leading MS doctor in this area said that they don't see as much disability now with the new drugs. I decided I had better stay on it. I do worry that if the insurance company stopped covering it I could not afford to take it any longer.
I know everyone gets there own version of MS, but the symptoms I had was, I was dizzy all the time. I could not run because my right leg would not hit correctly. I fell twice because my while walking because my right leg didn't move.
MS is not the end you just have to make adjustments. When I could not run I did the elliptical cross trainer. Since the diagnosis I have run a marathon, and many half marathons.
Good Luck
Steve Orchard, Running from AS & MS
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Joined: Apr 2009
Posts: 1,576
Gold_AS_Kicker
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Gold_AS_Kicker
Joined: Apr 2009
Posts: 1,576 |
MS is not the end you just have to make adjustments. When I could not run I did the elliptical cross trainer. Since the diagnosis I have run a marathon, and many half marathons.
Thank you Orch for giving me such a good example to follow. You are amazing.
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Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
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Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269 |
I echo that sentiment too Orch, you're such a trooper...of the two sisters with MS, one of them had a very extreme flare that took 100% of her vision and her mobility...and this was her very first flare, they rushed her to Houston where she got her DX and through proper disease management, I'm happy to report that she hasn't had any real trouble in well over 10 years... 
Age 7- Kidney Necrosis Age 11-Bursitis Age 14-Costo Age 17-Psoriasis Age 32-Thoracic Outlet Syndrome Age 33-Sacroilitis Age 35-Interstitial Cystitis Age 40-AS Age 44-Fibro Age 44-PsA Age 45-MS Age 46-Sjogrens Age 46-Raynauds Age 47-PF
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Joined: Sep 2009
Posts: 1,336 Likes: 4
Bronze_AS_Kicker
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Bronze_AS_Kicker
Joined: Sep 2009
Posts: 1,336 Likes: 4 |
MS has been following me along for so many years without a symptom of it just lesions in my brain. I have two complicating factors - a pituitary tumor and now my scoliosis. I have had no problems walking, etc. It has been 13 years now. When I was first told MS the neurologist prescribed Rebif. It made me feel so sick! I began losing huge amounts of weight and developing spinal pain. I quit it and I didn't think twice. I am happy to be walking although not as fast as I used to. lol I am sorry you are now having to deal with another lovely illness placed onto your plate! 
- Carpal Tunnel in BOTH hands - Depression (MDD) Major Depressive Disorder - Pituitary Adenoma - Scoliosis - Spinal Arthritis with bone spurs on spine - Multiple Scoliosis diagnosed - Herniating spinal disc - HLAB27+ - Final diagnosis: Mild lumbar spondylosis
Previously told Mechanical Back 'Issues'. Hate this term!
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Joined: Jan 2006
Posts: 3,016
Imperial_AS_Kicker
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OP
Imperial_AS_Kicker
Joined: Jan 2006
Posts: 3,016 |
Michelle thanks for taking the time to explain all this. You are a pillar of strength. Cindy
" That which does not kill me only makes me stronger"
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Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
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Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269 |
Well, today I feel more like a pillar of stone...  I'm sooo stiff but yesterday was my second Enbrel shot so maybe in a couple of weeks it'll kick in real good...I can't wait...  How are you feeling today Cindy?
Age 7- Kidney Necrosis Age 11-Bursitis Age 14-Costo Age 17-Psoriasis Age 32-Thoracic Outlet Syndrome Age 33-Sacroilitis Age 35-Interstitial Cystitis Age 40-AS Age 44-Fibro Age 44-PsA Age 45-MS Age 46-Sjogrens Age 46-Raynauds Age 47-PF
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Joined: Jan 2006
Posts: 3,016
Imperial_AS_Kicker
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OP
Imperial_AS_Kicker
Joined: Jan 2006
Posts: 3,016 |
Hey Steve thanks for popping in here. I know if these tests turn out possitive, it won't make any difference in my life. Docs 30 years ago mentioned MS and I never followed through so my life won't change. Just interresting to find out how many ASer's have MS too. My new symptoms are a bit frustrating and I'm hoping there is something that can help. I have enough to deal with without any new symptoms. Your strength and determination is admirable. Cindy
" That which does not kill me only makes me stronger"
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Joined: Jan 2006
Posts: 3,016
Imperial_AS_Kicker
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OP
Imperial_AS_Kicker
Joined: Jan 2006
Posts: 3,016 |
Hi Magician, thanks for you help here. Reading others travels with both AS and MS help. Cindy
" That which does not kill me only makes me stronger"
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Joined: Nov 2002
Posts: 6,928 Likes: 3
Addicted_to_AS_Kickin
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Addicted_to_AS_Kickin
Joined: Nov 2002
Posts: 6,928 Likes: 3 |
Oh sweet Cindy. I am so sorry. Give me an email when you can and let me know how you are and what is going on with you. I feel you have had your share many times over.
Hugs dear friend. Possi
Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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