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I have had Lots of bloodsamples and nothing Found. 8 years ago i had an inflammation in The thyroid and The GP told it Was autoimmunedisease . But thyroid bloodlevels are normal now. I also have frozen shoulders and The ortopæd Said that it could be autoimmunedisease , but they dont know. My worries are that i have dystonia , writers cramp, fascikulations , frozen shoulder and athrophy. But i Think i have to Wait for RH.
Yes I attended this group and I hope we can make a difference to some extent. Denmark is a village! Everybody knows somebody! Don't hesitate to ask if you have any questions. I would go back to my GP with all my symptoms written down. Ask for some blood work to see if you have any auto immune reactions going on and ask to be seen by a rheumatologist.Thanks for The link , i just Read it. I saw on The FB page , en chancetillasse. My Collega told me about The page , she knows his søster. I have donated some money to him . Maybe You are is this groupe too ? I understand that You want to be anonym , so do i . But thanks again for answering and for reaching out to other danes. It is very hard to be in limbo When You have some symptomes. I have had dystonia in Right hand for several years but havnet been worried before , i didnt Read about it , but it Got scared When i saw The fascikulations and now The athrophy in my shoulders.
Hi Koko.
Sorry for answering so late, I'm not often on the forum. I'm so sorry to hear your story. Waiting is terrible. You can always call RH and ask if they can see you any sooner. They might have a cancellation and see you instead. There is nothing I can do for you to speed things up. You can ask atsugi or NikkiJ (moderators) to connect us via our personal email addresses. They have been very helpful before. If you have some kind of insurance you can always go private instead. I wish you all the best. Try to be positive, ALS is a very rare disease.
Best regards
Pernille -
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