God bless you, you are Amazing, and give me such inner strength.
Thanks everyone for your comments and I am glad Mimi1 that it has given you inner strength. Thatâs what we are here for to help each other!
Plus BNashville I really wish I still had a dog. I lost mine 3 years ago. I couldnât have another at the time because of my problems and my husband had terminal cancer soon after. Now I am waiting for the right rescue dog to come along. I couldnât deal with a puppy and need a small dog. Small dogs are few and far between to come up for rehoming it tends to be the bigger breeds and particularly Staffies. Doing the RSPCA website is a help as they have given me first choice should the right one appear.
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Hi B, I feel similarly to you. I wanted every test available to find out WHY? Had genetic testing done through 23&me and I do have anomalies on the SCN9A gene. It just calmed my mind to know the burning was genetic and I proceeded from there. Sheltielife and Mads have helped me just CALM DOWN during a flare. I race here to keep my sanity and get treatment ideas. I hope you are having a âcoolâ day.
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HI Satochan,
Thanks for the mention that Mads and I helped you to calm down, donât know how I did this but glad to help.
I am so very sorry that you have to go through this. I agree what everyone said. What a great inspiration you are. Itâs funny that purpose was mentioned. I just finished reading the divine purpose. Helping people and animals definitely brings a sense of happiness and peace. I am very grateful to have you here to talk with. I love animals sometimes more than people lol. I hope tonight you have peace and sleep well.
Hi,
Like you, I did the 23&me and I have mutations on the scn9a gene. My understanding is that there are multiple possible variations of this gene and not all of them are bad. Iâm having xenon Pharm do my genetic testing. Ask for Emma and she can enroll you in the EM study.
Hi rayofhope
Thanks for your kind comments about me. I certainly prefer animals to people a lot of the time they are always loyal to their owners.
However, I am beginning to lose my positive outlook recently. In early October a month after my amputation I fell and landed on my stump it hurt at the time, but then got a little better. I requested and X-Ray but the docs refused said it wasnât necessary! Since then itâs gone worse all the time and is now agony and very swollen. There is a hard lump on top of it which I am sure shouldnât be there. My GP sent me for an X-Ray at long last it was done on Friday. On the card he put it was a below knee amputation when itâs above knee! He probably thought this hard lump was my knee even though he should have known it was above knee. I am really worried in case something is wrong. I should have had a follow up six weeks after the op but itâs not until the 29th December!
Yesterday someone suggested I post a photo on the Amputee Facebook page to see what people thought loads of people said it shouldnât be like that. The result of the X-Ray should be there today, it should have been Monday, but wasnât there so I phoned the X-Ray department. She admitted she had made a mistake and put it on the routine list instead of the urgent one, which made me worry even more.
This is the photo I posted on Facebook.
That just makes me very mad⌠These doctors and staffs. There is no room for errors. Get on them and stay on them. I pray your xray results are good but also hope that they find out the root of the problem. If nothing shows on xray maybe an Mri would be next step with no wait time as it should be considered urgent. Enough wait time already. If it was them they would be on it. Good luck my friend and best wishes to you for good results with a fast solution.
I have got the X-Ray results and it shows no fracture. That doesnât mean there is nothing wrong though. My GP is coming to see me tomorrow to have another look at it. I agree the next step should be a MRI scan. If he refuses I have decided to pay myself. I shouldnât have to but better than not having it and it would be done quick. A while ago I had equity release on my bungalow so that if need be I could pay. I havenât got any family so donât need to leave it to anybody. I made a will and whatâs left is going to the local RSPCA the animals deserve it.
Thatâs great no fracture. I would think your pcp would say you need an Mri if not how can he sleep at night knowing your not? Maybe say that to him. A sentence that has gotten more attention is⌠If I was your wife your daughter your sister what would you want to be done? Is this the decision you would hope for if I was your wife? It makes them think⌠Some of them. You shouldnât have to pay for it. Iâm glad the doctor will see you tomorrow. Keeping fingers crossed for an Mri to be ordered but still hoping for good results.
I will let you know what happens tomorrow good questions to ask him. Just wondering if we should move to private messages as itâs off topic. See if we get comments off others who might want to follow if not I will tell you by a message
Sounds good. Best of luck. Keep strong
QSART Update: I got my results today. Like I suspected, my results were abnormal in my feet and arm/wrist and borderline on bottom leg. This indicates SFN so rheumatologist is referring me to neurologist and thinking more autonomic nervous testing might be needed when EM is considered. From my understanding, SFN is very common with EMâŚand some people explain EM as a mix between a nerve and vascular problem?
Good that you have a diagnosis. Yes SFN is often connected with EM. You have a chance of something to relieve your symptoms.
Thanks for the positive thoughts! Iâm going to read some past articles on SFN and EM since Iâve now been diagnosed with both. I was diagnosed with EM first but maybe they came at same time?
Crossing fingers that this is the start of help so you start feeling better!
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