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Just an update if it helps others

I am still in limbo and my symptoms are slowly unravelling. Nuero still seeing me every 6 months thank goodness. Nearly given up trying to find solutions but with my sister and daughter showing symptoms then I feel I must push forward in order to get a good care plan in place for us all to improve confidence in what is happening to us. I had another stroke like episode last April and from then have now lost all hearing in right ear and left is catching it up. Further deteriating in eyes too. No tolerance for Exercise and brings my body to a virtual stop. Shooting pains/stiffness and all the extras this brings. A Hemotologist has taken an interest in us all and is now seeing all 3 of us. He has referred me to cardiologist for my heart condition and ENT to re look at my hearing, this is a relief as GP would not refer, the excuse being ’ we would not learn anything new’ I wonder if this is the new mantra for GP’s when we ask for referrals. Saw Nuero last week and he has ordered Genectic testing for Mitocondrial Desease via blood, he has offered me a muscle biopsy from the thigh too, but I am thinking I will wait until genetic test comes back. I hope everybody else is making progress too xx

poppyseed nee Medion

Hi Poppyseed, I’m glad things seem to be moving forward for you and your family and hope that it results in getting some help, sooner rather than later. The GP’s at my practice have been only too happy to refer me. The NHS is not a consistent service across the UK unfortunately. I’m so grateful that we have it but it needs improvement in many areas. Wishing you all the very best :heart::heart::heart: