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Replies to "Desperate and undiagnosed Back in Oct 2013 I started experiencing muscle twitching in my left leg...."
@undiagnosed2013 Seems to me that you, like me and millions of others around the world, especially in the USA, are a victim of a long-lived form of hatefulness, that of "If I cannot diagnose your problem, you do not deserve to live." I have lost two careers, nearly my sanity, and nearly my family as a result of this cycle of hatred. Now, I don't have an easy answer for you, but when my legs started twitching like that, and then turned black around the lower calf to the ankle, I was in real pain. Mine turned out to be Gelsolin, a form of Amyloidosis. But I had already started treating my burning facial purpura with Gold Bond Psoriasis Relief Cream with Aspirin, and with Noxema, trading off every few hours. It has worked like a charm. So I thought, "What the Heck can I lose?" So I started treating my legs with that, as well. Now my legs no longer hurt and twitch, but they still have the black-purple bands of purpura around them, from the calves to the ankles. And I still get the purpura on my toes and around my eyes, and the rest of the symptoms are still there. Now, if I were in your shoes, I would go to the human phenotype ontology (www.hpo.org/ and enter your best guess or our symptoms, and see what they come up with. And ask your doc to do the same with https://www.omim.org/entry/ and put in something like "twitching leg" or such. Then follow the trail. Or, have a good genecist help you find the problem. There are many such sights, but a start with some place like Ambry or Sequencing, or Nebula would be helpful. Sad that you will have to take control for yourself in this matter, but it will be worth it just to know how to do things like this. Slowly but surely, we will move modern medical practice to the 21st century.
@undiagnosed2013 Welcome to Mayo Clinic Connect, a place to give and get support.
It sounds like you are seeking proper medical care with no answers yet. Having muscle atrophy with no known cause must be terrifying.
You'll notice that I moved your question to a previous discussion. I did this so you could connect with members like @kengroninga @rivergirl8243 @bustrbrwn22 @lineage @jenniferhunter @jakedduck1 @wisco50 that have discussed this topic before.
May I ask if you have any next steps planned?