Tired not fatigue
Hi, I told my doctorS (multiple) that I'm tired and can fall to sleep in the morning after up to 12 hours of sleep and two cups of coffee in the morning. It's not fatigue because I've had that and feel the difference. The doctors test my blood for the usual culprits. Low iron, thyroid and liver function, etc. Then results ok and tell me things like drink plenty of water, exercise more and eat good. Then "Are there any other concerns you have that you want to talk about today?" I have other symptoms that showed up about the same time but docs think the other symptoms are not MS related and after lots of testing they just tell me it's because I have inflammation somewhere in my body they're unable to test for. I was officially diagnosed in 1992. On DMT from the beginning. The other weird symptoms are total hair loss on head and all over body that the dermatologist said he'd never seen this in his 30 years practicing and all my nails deformed, thinned, stopped growing and some fell out. I've seen a rheumatologist, and of course primary care doctor and neurologist. Anyone out there having any of these symptoms?
Hi,
!
I am glad you took the time to share a bit of your diagnosis story with the community. I get frustrated every time I read of yet another person with MS having to fight for years for a proper diagnosis and having their symptoms and concerns disregarded or treated very cavalierly. Talk about adding insult to injury. You're feeling terrible and then you have your symptoms dismissed.
I am glad you finally got diagnosed.
As far as hair loss, I do know that some members of this community have dealt with hair loss, but perhaps not to the degree you have. I wanted to share this piece about hair loss from one of our former health leaders. You may want to check out the many member comments at the end of the piece and see if someone else has experienced hair loss to the degree you have -- https://multiplesclerosis.net/living-with-ms/losing-hair. Did your dermatologist ever mention alopecia? Please keep in mind that I am in no way trying to diagnose you, but hair loss all over the body is one of the hallmark signs of alopecia. I knew a young man that experienced alopecia after an especially stressful period of time. Alopecia is an autoimmune condition and autoimmune conditions do often like to travel together or in packs. And, while it may not be alopecia, I did want to share one piece from our sister site dedicated to Atopic Dermatitis on the topic -- https://atopicdermatitis.net/living/alopecia-lost-hair. Again, some of your symptoms that don't seem to be MS may be another autoimmune condition.
How has your experience with DMTs been? I hope they have worked well for you, overall.
Best, Erin, Team Member.
