What shall I do?

[Adlon57]

I have lumps on my prostrate glands, from schwannomatosis, from September last year, I have been isolated from mid March, by my Doctor, when telling me to isolate for 12 weeks, I had diabetes, I would have been isolated with my other medical conditions but a Belfast hospital wants to MRI my 'growths', I'm obviously been worried about? My daily routine, high temperature about 37-38, about dawn, crawl to open window listen for dawn chorus, highlight of the day, water bottle always handy, very dry mouth, [wheeze like a donkey] after about two hours lie in bed, temperature about 35-36, have breakfast [I live on my own] rest of day lethargic existence, food delivered to me by sister, a shower always helps, taking about 10-11 pills a day for various conditions, hospital had offered twice an MRI, obviously an misunderstanding somewhere? but I repeated that I was isolated via GP until 15th June. Sister petrified that if I went to hospital, practically said she would not take me there in case I got Coronavirus? I have a few more lumps, growths, schwanomas, since been isolated last month my "normal" temperature is about 36.2, I should be in hospital a.s.a.p, but if I got Coronavirus, not much chance of survival? I can feel these lumps as I am writing this down!

[hunter5582]

Sorry to hear you can't safely access the medical care you need right now. Like you, I also have a Neurofibromatosis, in my case Neurofibromatosis Type 1. While I have mostly been mildly affected by the NF1, it caused a brain tumor I had to have resected last year. Also seems to have caused something new a tumor on my jaw (likely intraosseous neurofibroma). I am having to wait to have the tumor on my jaw addressed as there are no elective surgeries being performed. I have, however, been able to get out to have some of the imaging done needed to address this situation. I stay out of the hospital setting and go to a free-standing imaging center nearby. They have very strict protocols in place and I feel quite safe going there. Not sure if you have the same option where you are, but it might be worth a look.

I do hope the prostate lumps have been clearly diagnosed a Schwannomas. It is a serious distinction to be made with significant health implications. Sounds like you have a peck of issues to deal with. You sure don't need more. I have certainly been there and done that myself.

Hope you get some relief ASAP. Take care.

[Adlon57 in reply to hunter5582]

Thanks, it seems all I can do now and wait? At least I know there is a hospital waiting for me to do the MRI and surgery as soon as possible! I have had surgery done before, I can actually feel some of these new lumps now, but at least they will know what to do, in 1997 they were going to admit me to a mental hospital, then MRI's came into the NHS, one on my spinal cord, about the size of a walnut! I'm the only one in Ireland with the condition [NF3?] Guy's Hospital, London, are aware of my situation. The Coronavirus situation might speed up, my GP would tell me to "get in there!" before June 15th, about half way there now? My worst time is always morning, as soon as I wake up, temperature way up!

They keep saying it is Cancer patients, on the news, who are suffering due to the time and attention spent on Coronavirus, there are other extremely painful conditions in the wings who are just as important!

Although my Epilepsy seems to be well controlled, one seizure since April 2018, I am 'celebrating' 50 years of those this year? My diabetes seems to be clearing up, weight dropped from 17.3 at the beginning of December to 15.7 this morning, have not touched a chocolate in over five weeks?

[hunter5582 in reply to Adlon57]

Glad to hear that you are keeping the weight off whilst being stuck isolating. Others are not so successful at that. But no chocolate at all!! Dreadful state of affairs. I found this sugar-free Dark Chocolate with Stevia that was quite good. It was a great substitute.

Sounds like you are managing a lot. I would be very surprised if you were the only Schwannomatosis patient in all of Ireland, though it is a rare disorder. You may well be the only one in Ireland with a NF and a MPN however. We are a rather rare breed. You and I are amongst the few on this entire forum who have both types of conditions. I hope we can ultimately find out more about the implications of having both types of disorders.

All the best to you. Stay well and stay safe.