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Posts (93)

1 day ago · Difficult case, several diagnosis, no solution yet in Autoimmune Diseases

Hello Stumpjumper my name is Beryl …..I have been suffering for many years from Polymyalgia Rheumatica…..but have been lucky enough to have a Doctor that has seen me through the awkward trials of having one of these diseases and I am now at a stage where I understand my limitations and therefore can live a useful life….I am 79yrs old so didn't full ill in early life as you have…..
My reason for answering you without any way of helping you is to say that I have all the faith in the World that you will be looked after by the Mayo Clinic and that it will help you live with and understand what is going wrong and hopefully find a way out of your distress ….
I notice that John our mentor has given you some information that hopefully will help …..I hope you will keep in touch so that we can follow you're progress and be pleased for you when your health is beginning to improve ……just understanding what is wrong is a big step to regaining your life again
Best of luck Beryl

5 days ago · New Diagnosis of Polymyalgia Rheumatica (Husband) in Autoimmune Diseases

John I like,that remission bit !…..👍😀

5 days ago · New Diagnosis of Polymyalgia Rheumatica (Husband) in Autoimmune Diseases

You are not alone I too have osteoarthritis …..aren't we lucky….😘😉🤓🤗. Beryl

5 days ago · New Diagnosis of Polymyalgia Rheumatica (Husband) in Autoimmune Diseases

Hello, my name is Beryl……I too used to have a hot shower straight from bed …..it helps me when I could hardly move ….had PMR all over my body ……terrible…….I also found a hot pad under the bottom sheet very helpful…..try to,find,one that is not plastic they are better and don't get so hot ……get the one that switches off after an hour …..you can if you think it better get ones that stay on until you switch it off …….good luck and keep talking to us between us we have a lot of experience …….Beryl

Mon, Jan 7 1:35pm · Facial Swelling - no diagnosis after 2 years in Autoimmune Diseases

Hello my name is Beryl …..all I can say after reading your post is…I am so sorry for you and your family to have this terrible thing happen to your daughter …I just hope there is somewhere someone that can bring some understanding of this so that there can be an end to this horrible life your poor daughter has endured and bring some quality of life to you all …..God Bless you all……Beryl

Thu, Jan 3 3:16am · Morgellons Disease and Parasites in Skin Health

Oh! My Goodness Elizabeth had no idea that you were in so much trouble still….I thought that someone would be helping you out of your terrible predicament now that they have found out what was wrong with you……

There has to be a Doctor somewhere that knows how to deal with this ……

It was many years ago that my Alsatian dog had something similar .and at the time the vet. who happened to be Italian said it was caught from cows so what do farmers do if a cow gets this thing…….I was in the States and my son had taken my dog over when I left so I don't know what happened or what the vet did ……I did ask my son but he couldn't remember….All I know is that in dogs you can put medicine on a part of there body, usually by the tail and on the neck and this goes into the blood stream and kills any unwanted visitors such as mites etc……

Sounds like it would be a good idea if the two professions got together about this to see if they could find anything that would be safe for humans……this might be an outlandish idea but you never know something could come out of it …..

So sorry you are so miserable Elizabeth but I hope somehow the new year will bring relief to you …….Beryl

Dec 31, 2018 · PMR strength in Autoimmune Diseases

My name is Beryl…..I was told by my Rheumatolgist that I should wear support stockings …..I found that the odindary ones you get from the store that are not too tight were the thing that helped me most…they have a light support and feel good when you walk ….they will help keep any slight swelling down that you may not notice that you have….try them they are not expensive …..and to as Lioness says HAPPY NEW YEAR…….

Dec 30, 2018 · PMR strength in Autoimmune Diseases

Hello my name is Beryl, Rolandhp…..I have had PMR for a long time and in Sicily for the winter, yes I know what a place to be on the slopes of Etna with all its carrying on at the moment …..we have sure had a different time with the bangs and shakes ….fortunately we are still in one piece and it has been quiet for a couple of days ……we just wait with baited breath ……
I really does help reading others experiences with pred. and it's obvious from what you read that we are all different and have to judge , with the guidance of our Doctors of course …..what and how much is good for us …..we all want to get off it but mustn't go down too fast …..I am at the stage where I have been told not to go lower than three , but I can go up if needed, so I wait and hope that the day may come where I can start to lower again slowly……all the best of luck with your recovery……Beryl