MRI on both ears and on nerve, waiting for results. Seeing ENT on the 25th November. Wrote to Neuro to let him know about MRI as he can request a retrieval from the hospital. Still awaiting for muscle biopsy which I am not looking forward too. Changed my GP and the new one seems more forward thinking so it offers me relief, I was really reluctant to change, but I am glad I did. Had a letter about PIP application and they are writing to one of the medical professionals I gave them and will let me know if I need a medical assessment, have others had this please?
its exhausting trying find diagnosis.
i wish everyone well 
Hi, read your pm, but for some unknown reason, I couldn’t reply by pm. Yeh, I am not completely diagnosed with HSP as we don’t know my full family history. Do you have HSP? What are your symptoms? I am really sorry to hear you daughter is showing signs of something untoward.
Luv pollx
Neuro thinks it is something rare and I may not ever find out what it’s called, but my much younger sister is showing symptoms and unable to work. My 2nd daughter has some symptoms and milder than my sisters. We found a sympathetic Heamotoligist who does a lot of research and is seeing all 3 of us, he sees we are all at different stages. The idea is if they find it in me, give it a name, treat it then it can be slowed down in my sister and daughter. My tests are a little aggressive because of this. Waiting for muscle biopsy so they can do genetic testing on the sample in Newcastle. I have symptoms in different areas of my body. Hearing and sight affected. Bladder and stomach. My muscles just decide to stop working. My worst are upper arm and upper legs. I am still mobile, just have to rest a lot. Memory problems, numbness and cold patch’s etc. Because it affects different areas of my body they are thinking a mitochondrial disease.
i am tired, but pushing on for my sister and daughter. It’s tuff, sometimes I just wish I could hide instead.