primary progressive ms friends wanted
glenncito
Posts: 2 Member
Hello everyone... I have been on mfp for awhile now and lost about 20 lbs a few months back.. Then I kinda fell off the wagon thinking I could do it on my own...I gained about half back and now I need to get back to it... This time hopefully with some friends than either have MS or are a care taker to someone who does.. I can still walk but my balance is very bad... You can blow me over with a feather. I used to be very active with mountain biking, scuba diving and sports.. Was lucky enough to have good genes and was a solid 6'1" 210lbs.. After my dx I worked for a couple more years before my company forced me to retire.. I think now I kinda went into a depression and went up to almost 270.. I think I was so used to staying in shape with out really thinking about it and eating what I wanted that I told myself I can lose it when I want too...Well after almost 4 years now and pushing 50, I need more help and support... So if you fit the bill and like to support and give out Ideal on diet and working out.. I might just be your next friend.. Thanks in advance Glenn
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Hi. I was diagnosed with RR in 1997. Started having problems with my legs feeling like I was wearing cement boots all the time in Jan of this year. Tried several rounds of IV steroids to no avail. Finally went to the Mayo in June of this year. Was informed I had moved in to Secondary Progressive. Not real pleased with this news, but determined to make the best of things. I too have always been extermely active until MS joined my world.
Mayo doctor is now my new Neurologist. Started Tysabri 2 1/2 months ago, and yesterday my legs feel slightly less heavy. Hey, after 9 months of "trudging" ...I'll take it! I have started exercising again and after yesterday, I am back to mucking stalls ( truly a lobor of love!):laugh:
We have 3 horses, as I am a tried and true horsewoman. I fully intend to ride again.
Have been on MFP for about 1 1/2 yrs and have lost over 65 pounds with about 50 more to still go to get down to my pre-MS weight.
I am not in a race, I am in this change for life., so not I'm not too concerned with how long it takes to come off--just as long as I keep moving in the right direction.
My husband is also on this site. His name is stevLL.
Would be happy to lend support.
Send us both friend requests if you like.
I wish you all the best.0 -
Hi Glenn, I don't have ppms, I have the relapsing-remitting kind. I was finally diagnosed in March 2008 but my neuro is pretty sure I've had it since the early 80's - they have found old damage to my spinal cord which would have explained so many problems I had with balance and walking and losing strength in my arms......better late than never. I have some balance problems now, mostly my problems are with my vision (damaged optic nerve) and with cognitive. I am still working full time but I find it harder and harder to put in the long hours without totally exhausting myself.
I know quite a few people who have ms in all of the forms that it comes in. One of my friends went from being very active like you and within the first 5 years of diagnosis he was using a cane and a walker - now he rarely walks or stands without help. So, while I may not know exactly what you are going through - I've got a pretty good idea and can be a sounding board if you need to vent. I've been through the depression and the panic attacks too!
I'm down 50+ pounds since I started - want to get down another 25 before I just stick to maintaining it. It sure doesn't get any easier the older you get.
Bea0
