Been a rough couple of months - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Been a rough couple of months

Tomcat profile image
9 Replies

I’ve had APS for over 20 years and it’s been a real pain in the ass, I’ve seen so many specialists and had so much blood taken, it’s caused joint pain and memory issues. Last year I had to go and have an MRI on my back due to weird pains I was having, I was later diagnosed with a bulging disc in my spine. Fast forward to February and I get a call out of the blue by a Dr who had seen my MRI results and contacted me to tell me that my kidneys looked unusual and could I go for a CT scan. One scan later I get an appointment to go see a urologist, he tells me I have cancer in both my kidneys and that they need to remove one of them, this happened 3 weeks ago! I’m still recovering at home but it has been noted that my memory has improved a little, my concentration has vastly improved and my blood pressure is a lot better than it was. When I was first diagnosed I asked why I and I was told it could have been an infection or bug that had turned my immune system against itself, I now wonder if my kidneys had something to do with it?

What I have noticed is that prior to my operation I used to be really hot all the time, sometimes I wouldn’t even realise until my partner told me she could feel the heat coming off me. Now, since my op I still get warm but it comes on suddenly and only on my back (literally feels like I’ve sat with my back against a hot radiator!). Has anyone else had temperature issues? I’m fairly sure my thyroid has been checked numerous times before and it’s always been ok.

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Tomcat profile image
Tomcat
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9 Replies
HollyHeski profile image
HollyHeskiAdministrator

Wow you've been thru the wars - I'm intrigued to why after so long your MRI it was re looked at?At least now they have identified and are dealing with the cancer.

Men (And mainly women) get radiated heat due to hormone changes, your cancer could and still be causing this - please mention on your post op check up or to your oncologist, only they can really answer your question and check everything out thoroughly.

Wishing you a speedy recovery.

wishing you a quick and powerful recovery Tomcat.

GinaD profile image
GinaD

I'm glad you've come this far! Yeah! I have no practical information, but I cheer you on as you seek answers. Stay strong!

Tomcat profile image
Tomcat

Thank you!!

Lure2 profile image
Lure2 in reply toTomcat

I wish you good luck Tomcat!!

Kerstin

Charts profile image
Charts

I'm sorry you have had to go through all this. Was the bulging disc in your spine aps related? My back is playing up, it keeps going out of alignment so the disc must be moving. Wasn't sure if aps would affect your back in this way.

Tomcat profile image
Tomcat

Honestly not sure tbh, I’ve had a lot of physical jobs in my past so it’s possibly an old injury I didn’t know about. That said APS has caused so many problems it’s hard to be sure.

Charts profile image
Charts in reply toTomcat

Yeah I've done physical jobs in the past so I thought that. I've got an aunt in Spain with disc problems and now they're saying she needs to see a rheumatologist (which I thought was weird) but just wondering if she might also have aps and is there a connection with the back. I think lots not known about aps unfortunately....only the future will tell.

Cecethat profile image
Cecethat

Oh yes. I have them often. I also have sudden bruising and warm to the touch. Scares me to death. But, I was told that it was normal and that my circulation may be lacking due to being in the bed a lot, which may be causing the bruising. My memory is just horrible, as well as the fatigue.

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