Wow - great welcome! You're right - -this is the best site on the net! Thanks for quick responses and support!


Pat, you asked about my symptoms.
They started out about 4 years ago. Very active person - thought I was getting out of shape when I began to notice I couldn't hang onto grooming brushes when I was taking care of my horse. Arms would get real heavy - no pain, just heavy. But if I took a break, I could finish up. It got worse over time, my breaks got longer and I began to notice that any repetitious or strength activity was tough. Summertime was awful, but plunging arms in a bucket of ice cold water was/is very refreshing!

Then, in late 2006, my legs (esp. the right) went fibrotic. It had been swelling and getting heavy but I forgot to stop until I got a stasis ulcer. Anyway PCP said lymphedema and I went into therapy for 8 weeks, then into heavy duty compression hose and a very low salt diet forever.

Funny, but it has been since then that more challenges crept in. Each January, I would do an assessment - - and each January I could do less. I used 'scientific' measurements - like how many batches of Christmas cookies could I bake in a day, how many holes of golf could I play before I dropped the club! But there never was a rhyme or reason from one day to the next. I thought it was the lymphedema because they had said mine was primary tarda (genetic, systemic) and I may need to decongest the arms at some point.

Anyway, this last January, my wonderful hubby sat me down and expressed his concerns. Apparently he was seeing many more 'assessments' than I was willing to see. And even I was noticing that my stamina was awful compared to normal. I used to walk at least two miles a day - and over the last 18 months it had become an occasional crawl around the block - - with me arriving home breathing heavy!! So the search was on...and after PCP, rheum, and neurologist #1 (total waste), I got to neuro #2 who is/will be my doc from now on.

Curiously, neuro seems to think that the lymphedema will improve with time. Thinks that Mestinon muscles will better support the lymphatics so they can keep fluid from building up. Would that be great!

Pat, have you had to increase or change meds over the years? I have read that Mestinon levels have to be increased to continue to be effective in some folks - and for others, it stops being effective. Thoughts?

Thanks for interest and help
Sue