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Undifferentiated Connective Tissue Disease

Autoimmune Diseases | Last Active: May 9, 2023 | Replies (75)

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@becsbuddy

Good morning @cherylmcg You sound so positive even though you’ve got this long list of other diseases. I’m very glad glad you’ve met @yellowdoggirl. She can probably be very helpful to you. . I wanted to ask though with the other diseases that you have like Charcot Marie tooth and hypothyroidism are they managed pretty well or does everything get in the way of everything else? I’m really glad that you don’t have much pain!
You are going to increase your hydrochloriquine today—will you let the group know how you do?

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Replies to "Good morning @cherylmcg You sound so positive even though you’ve got this long list of other..."

Hi Becky. Thank you for your positive reply! Although my CMT symptoms have been there mildly my whole life, when a friend said you walk funny in my 60’s, I went to Stanford and had the nerve conduction test which confirmed CMT 2 in 2014. There is nothing they can do as it just gets progressively worse. I found braces made by CMT’er in Canada that helps me walk. I found a toe support fit my hammertoe. I’ve stopped dancing and hiking. I bike 3 days a week 60-75 miles and do weight lifting. My insomnia is managed by limiting coffee, activity in the evening, quiet/dark room, hot bath and eating carbs before bed. I struggle currently with fatigue/mood coping skills. I walk slowly which has reduced my falls. I take care lifting but find I’m breaking kitchen dishes more frequently. I will keep everyone updated about the hydroxychloraquine. My swollen salivary gland became very enlarged last August after bicycling in a dusty road along a marsh. I applied hot compresses 20 minutes each day morning and again at night and consumed 10-12 8 oz glasses of water for 6 months, massaged the area and sucked on lemons and it has gone down but it’s still there. Then I was referred to a rheumatologist and started the hydroxychoriquin. My hypothyroidism blood work is normal on 44 mg of medicine starts with l. My WBC counts are low….