Diagnosed with myosotis but not sure what type

[Eddie1969]

Hi,

I have had myocarditis twice, 2019 and then 2021. And in 2020 I started having pains in both my elbows for quite a while as well. Takes my ages to get over the myocarditis and I have had trouble walking up hills without getting breathless but was fit and health before all this. Was running and going to the gym.

Suddenly everything hurts, tingling and pins and needles in my legs, feet and arms at night. Back ache and my back keeps popping out, so have to take it really easy for a few weeks. Very hot at night but also going through the menopause. Not helping either.

Was referred to rheumatology in February and after a number of blood tests, he has diagnosed me with myosotis. I have read the nhs site and the myosotis uk but I am unsure about everything.

I have another ct scan booked in and mri and EMG (I think that’s what it is) but will these test tell me what myosotis type I have , as my consultant doesn’t want to put me on any medication yet, as he is unsure where I am in the progression of this illness.

He has asked me to contact him if anything changes, but I don’t know what I am looking for in way of changes.

Sorry if I am rambling but I am in the dar a bit. Can anyone help.

Thanks

[WestHamsupporter]

Not sure if my comments are of any use, but just wanted you to know I have not yet received any diagnosis, but have been bedridden for the last 2 years. I used to be VERY fit, cycling up and down the Black Mountains, over 50 miles a day, with a full day in the lab or fields in between. I have been diagnosed with epilepsy, but had been seizure free for 10 years, until I had another one. I'm not sure what caused it, other than stress. The registrar at the hospital was great, couldn't believe I'd had to wait 3 months for an MRI scan, said I had some strange problems with my brain, and also my spine. When the neurologist saw me, I told him what was going on, told him I had been on a drugs trial for Lyrica, he replied "YOU'RE NOT ON A DRUG TRIAL " upped my dosage to include Lamotrigine, since which seizures have increased, I changed my neurologist, who changed my medication to include Keppra, which significantly increased seizures. I find it very difficult to see the new neurologist, as I live in a rural village in Devon, can only get to hospital by ambulance, which only accept A+E during pandemic, which I'm OK with. Stupidly I have looked online, noticed Lyme Disease can have some similar symptoms, but it's possible cyanide poisoning might be responsible after a pollution incident I attended. I could go on and on, so will stop now. Have a nice weekend.

[Eddie1969 in reply to WestHamsupporter]

Hi sorry to hear about you situation and so sorry I didn’t reply soon. I have been diagnosed with Necrotising Myositis and have had more tests, and have a really good rheumatoid dr, who has been really helpful. I won’t see him for quite a few month now as need to have the results from all my tests. I have changed my diet and have stopped eating meat and fish, basically plant based plus eggs and cheese. Not sure if this will help but after looking up myosotis it does seem a good place to start.I hope you situation improve and I wish you all the best. Thanks again for your reply

[Catpuss66 in reply to Eddie1969]

Try joining myositis uk community forum on Facebook , you will get more support from there, there is also files on myositis specialist consultants & the best way to access them plus more blokes on there so might be more relevant.