Hi all, I was diagnosed with ET at the end of February 2019. I've had 6-7 years of chronic headaches. I went to G.P and was told I had Sinusitis for years. Went on to develop dizzy spells, hearing problems, even went blind on occasions, then told it was Eustachian Tube Dysfunction.
I don't know if it has any connection but in 2015 my left arm and hand went into a cramp and I didn't regain full function for about 2 years. At the time had blood tests but told everything was fine. In 2016 or 17 went to hospital with chest pains, they investigated me for breast cancer and took bloods, again told everything was fine. Throughout I've been fatigued and had soreness and colour changes to my toes. infrequent electrical type shocks in fingers and toes. However I've never missed work due to my symptoms. At the end of 2018 I had a really bad cold, knocked me sideways but went to work. Then January had water infection, then days later another virus. G.P took bloods, then next day the balloon went up. Sent to hospital told platelets were 1587 and on 28th diagnosed with ET. Apparently my previous blood counts had been very high, but it hadn't been raised as a concern. Initially prescribed 500mg Hydroxycarbamide but only reduced platelets to 1416 so upped to 1000 daily. The last count was 767 so upped dose Saturday and Sunday to 1500mg. From going on tablets developed joint and muscle pain In both legs. My feet got worse diagnosed with secondary Erythromelalgia. I've also had a severe bout of tonsillitis. The consultant put me on Aspirin about 3 weeks ago. I do have a CNS nurse at my appointments but she's never really given me any input about what to expect. She did seem to suggest that I should be well enough to return to work, so on the 11th of this month I went back on phased return. Started 3 hours on Thursday by Friday developed muscle pain in both legs. Was absolutely shattered over the weekend, on Monday had to do 4 hours and by Tuesday felt ready to collapse. Called the CNS nurse who said ideally want the count to be 150-400 and that fatigue was the most common symptom, so I should be off work. I wish she'd clarified that before. Spoke to G.P today and got new sicknote till 1st of next month. I really don't feel I have been given any real idea of what to expect. I got the feeling that the G.P and CNS nurse thought being on the meds for a month or so should resolve my symptoms and I should continue life and work as normal. My consultants letters actually say I'm feeling a lot better, which I've never said. I feel a bit hung out to dry really. No guidance no direction. Now so tired just want to cry, headaches daily. The slightest knock to my toes and I experience intense nerve pain. Hot and cold through the day, wake during the night due to hot sweats. I'm terrified I won't be able to maintain full-time work again. I was due to have a BMB but they identified JAK2 mutation from the blood tests so cancelled. I haven't really got a clue what's going on, it's like the blind leading the blind. I'd really like to know where my blood count and symptoms rate in the scheme of things. A lot of people talk about blood counts being in the 10's of thousands. Is mine low medium, I don't know. Am I just a big moaner?