Even my GP is having difficulty trying to progress things. He has been honest enough to say everything is now beyond his knowledge and needs help from the hospital as to what other medication I can have - at present I am on maximum doses of everything. I do have a partial ace up my sleeve. I am part of a clinical study and spoke to their team last week - hopefully will get a response sometime this week.
Now had a response. Seemingly Consultant not happy as he was under the impression things were happening. Now told to expect letter for MPS in the next couple of weeks or if not get back in touch with them.
That’s good news that at least you have heard something and a relief. Hopefully they won’t forget this time. At least you now have an ‘in’ Keep us posted and take care. I know it’s stressful having to chase everything. Zena
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