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Journals
Do you know your hands are soft?
- By M_McF_M · Posted November 19, 2009
- 4 replies
- This was a rhetorical question; of course I know my hands are soft -- I've been holding them out for weeks now for my friends and family to touch, and squeeze. It's such a simple thing, but such a delight ...
Living with FSH muscular dystrophy
- By tom43 · Posted November 13, 2009
- 1 reply
- I have lived with this for almost 30 years. Only recently have I done regular exercise so my muscles don't atrophy any more. I have never found any exercise DVDs for the condition. The DVDs that I have ...
Surprised the Neurologist Today
- By M_McF_M · Posted November 2, 2009
- 17 replies
- The last time I saw my neurologist, he offered me pain medication, when I hadn't complained of pain. The time before that, he told me I had a definitive diagnosis of FSH muscular dystrophy, and that physical ...
No shoulder pain, the brown socks are gone
- By M_McF_M · Posted October 27, 2009
- 5 replies
- Having a dislocated shoulder for the last two years has been aggravating. Not only could I not use my arm well, everything I tried to do was excruciating. The neurologist told me in March that it was ...
When do I get to 'normal?'
- By M_McF_M · Posted October 13, 2009
- 7 replies
- Every day that goes by, I notice little changes for the better. My fingers are squishier, my skin is softer, my swelling is smaller, my brown feet are fading. The biggie this week is that my shoulder ...
The fruits of getting better
- By M_McF_M · Posted September 29, 2009
- 22 replies
- Things are going fabulously for me!!! Love the change in the weather. It was 99 Sunday, and today the high will be 74, the leaves are falling and it is heavily overcast. I think we'll do something 'hearty ...
DMD Treatment
- By AKSHAT2009 · Posted September 25, 2009
- 3 replies
- dear all my son is 18 months old, he is diagosed for DMA . pls guide me about this treatment . what is the present statsu for this disease ...
Two month anniversary of AP
- By M_McF_M · Posted September 18, 2009
- 35 replies
- So, its been two months since I was diagnosed with scleroedema, and took my first Doryx, and prayed for results ... and I've gotten them! For those of you who've been told AP is a hoax, pay close attention ...
Energy is back.
- By M_McF_M · Posted September 12, 2009
- 9 replies
- So, before I knew what was wrong with me, I decided that keeping myself physically mobile was going to be essential to surviving whatever this is. In Jan. 2009 I found an outstanding physical therapist ...
This hollow in my hand...
- By M_McF_M · Posted September 6, 2009
- 2 replies
- i was driving to the grocery store this afternoon, and the angle of the sun was hitting my hand just right, and there was something different about my right hand. Between my thumb and my forefinger, the ...
Swollen hands, painful joints, energy & relief
- By M_McF_M · Posted August 29, 2009
- 39 replies
- I got an email last night from a friend in health care checking on my status. In trying to respond I realized that seven weeks ago -- and for the last four years -- I hadn't really realized how incapacitated ...
Physical Progress Continues
- By M_McF_M · Posted August 28, 2009
- 3 replies
- It strikes me that I have started to take for granted that I am getting better. I have also not posted progress for more than three weeks. The edema in my arms and legs has continued to go away. I used ...
Scheduled maintenance this evening
- By TeamInspire · Posted August 10, 2009
- 13 replies
- All, Inspire will be performing database updates this evening starting at 8:00 Eastern. We expect the updates to take no more than 2 hours and the site will be unavailable at this time. We thank you for ...
8/5/09: My rings are really loose!
- By M_McF_M · Posted August 5, 2009
- 11 replies
- I may have to get my rings re-sized...down! I'm so excited I have this huge gap between my skin and the rings so they are kind of drooping against my knuckle. I can press my fingers together and bring ...
Family Reunion Weekend 8/1/09
- By M_McF_M · Posted August 2, 2009
- 2 replies
- This weekend, my hyperpigmentation on my legs has started to noticeably fade, almost to nothing, and so has the "lace pattern" on my legs. I woke up this morning and my hands were flat and relaxed across ...
A supportive second opinion and more improvement
- By M_McF_M · Posted July 30, 2009
- 7 replies
- At the request of my primary, I met with doc at nearby med center. Told him what I'm doing for my care, and he was supportive. I told him how my muscles are gaining mass, strength since I started treatment ...
Trying to get clothes to fit...and incremental progress.
- By M_McF_M · Posted July 24, 2009
- 0 replies
- Maybe it was a you-had-to-be-there moment...a friend invited me over to swim. I dug the bathing suit out of the drawer where it has been hidden for a few years, and found out that when I put it on the ...
July 23, 2009
- By M_McF_M · Posted July 23, 2009
- 5 replies
- I got up this morning and started cleaning the kitchen. That may not seem like a milestone, but to have the energy to do that is huge for me. My lips aren't as dry; it almost feels like some kind of natural ...
The professionalism of my doctor
- By M_McF_M · Posted July 22, 2009
- 18 replies
- The rhemy I saw a week ago has been seeing scl patients for forty years, and is a member of the college of Rhematologists, so he's not a "light-weight" in experience or knowledge about scl patients. His ...
July 21, 2008
- By M_McF_M · Posted July 21, 2009
- 5 replies
- My hands didn't hurt this morning when I used the equipment at PT. My toes cracked when I got out of bed this morning, and they haven't done that in years -- my swelling in my feet must have gone down ...
