Feet- problems return : For those of... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,354 members10,542 posts

Feet- problems return

jetjetjet profile image
16 Replies

For those of you who know me I am sure you remember the time i had with my feet . The flesh just rotting away and no one could figure why . It too k over a year after i got out of hospital { may 2015 } before it healed enough to stop the bandages and treatments . two days ago i noticed a round sore on right ankle {left last time got the worse }.the left foot ,although isn't showing anything that can be seen - where the whole where the flesh rotted away last time is tingling and starting to be very sensitive.

This is very scary as in 2015 they were talking about amputation if this Antibiotic they used didn't work . To this day they never were able to identify or have they seen anything like it since. The end of the week we are going to attempt { if all goes well } an ultra sound to try to see if anything is showing in that area . I went thru hell with this last time and am very uneasy about what could be in my near future . Anyone with any ideas would love to hear them . Last time nobody had replied so thought maybe this time . will let you know if anything shows up . Thanks C & J

Written by
jetjetjet profile image
jetjetjet
To view profiles and participate in discussions please or .
Read more about...
16 Replies
Wittycjt profile image
Wittycjt

Sorry you are having this issue again. Perhaps you can find out what antibiotic it was that seemed to "cure" it the last time and ask your doc to start you on it immediately. I will be thinking of you and hope things will heal up quickly this time. From my thoughts to Gods ears.🙏🏻

jetjetjet profile image
jetjetjet in reply to Wittycjt

Thanks i am at step one now the ultra will be a god start also --I had a reaction to it so i would most likely have to be hospitalized , so i need to give my Dr's something to go on or my insurance won't pay and i wouldn't get it be i will let you know

Wittycjt profile image
Wittycjt in reply to jetjetjet

Jet :I don't understand what you are saying, please clarify.

ronnt profile image
ronnt

not sure about what u have i just joined but a natural antibiotic colloidial silver may help most potent i have found is from herbal healer 500ppm, cant hurt to try

Wittycjt profile image
Wittycjt in reply to ronnt

Ronnt: what is the specific name of this please?

ronnt profile image
ronnt in reply to Wittycjt

colloidal silver ive been using it for over 15 yrs i oder from herbalhealer.com fast shipping im in usa

jetjetjet profile image
jetjetjet in reply to ronnt

Thanks i wil loo into it

GinaD profile image
GinaD

So sorry to read that this problem has arisen again like an unwelcome health zombie. I have no practical suggestions but you are in my thoughts and prayers.

Gina

jetjetjet profile image
jetjetjet in reply to GinaD

Thank You my friend -- i HOPE it isn't the start of a bout with that again because this time i may not be so lucky !!

jetjetjet profile image
jetjetjet

Thanks my hope is to try to stop it before it gets hold -this time if it returns I may not be so lucky !! i wil let you know and they still have no Idea what it was or is ?? Big Hugs to you from Casey and I -- he goes to vets 29 th now

Lure2 profile image
Lure2

Hi Jim,

I hope you will have the best treatment if it will continue (hope it will be much better!!).

I do hope you have a Specialist today who knows Hughes Syndrome and yourself very well and the trouble it could mean for you if not correctly treated.

I will think of you and of course of Casey on Tuesday 29th. Let me hear how it goes now please.

Your friend in Sweden

Kerstin

ndstephens49 profile image
ndstephens49

Hi jet jet jet. I got a horrible ulcer on foot when a doctor stopped my Coumadin for a pacemaker surgery. I can't send you photo of foot as I don't know how on this forum. I also ended up in a foot salvage situation. I ended up in Cleveland Clinic in 2009 where they did an excellent job saving my foot. I was admitted through their Emergency Room where they debrieded my foot and put me on IV Vancomycin as I also had MRSA. It took 6 months to heal. After cleaning up ulcer so that it looked like red raw FRESH steak(sorry for graphic) they then started an ointment called solosite (I think) that caused tissue re granulation. You could practically see the skin cells regrowing.

Keep checking in with your doctor and monitor your ankle multiple times a day. This kind of situation can change drastically in a few hours. At one point the doctor indicated that this situation for me was no big deal. But my 'gut' told me otherwise. That's when we drove 5 hours away to Cleveland Clinic and they admitted me. Good luck. Nancy

ndstephens49 profile image
ndstephens49 in reply to ndstephens49

Forgot to tell you this. My GP taught me IF you have a reddened area due to infection or ulcer, outline the margins (not right in ulcer but red area around it) with a ballpoint pen so you can easily determine if redness is spreading. This was valuable to me in 2 situations--a cat bite (bad kitty) causing cat bite fever which caused redness to spread multiple inches per hour till IV vancomycin started AND the foot ulcer. I had proof in both instances the redness was spreading and how quickly it was spreading. Nancy

jetjetjet profile image
jetjetjet

Hi Nanc -- Sorry for the delay but i have been right out straight . I am showing NO visible signs on Left foot {out side of foot below ankle bone right to where your foot rounds , that was the real bad site in 2015 to 2016 } BUT I feel the tingling and tenderness NOW i am on Many med's among them Gaba - Morph - Oxy -Tizanidine and Baclofen . So the pain is being Masked if you will . The cream that worked the best is very expensive ,SSD { Silver Sulfadiazine-- it is for severe Burn patients }-I need to find out what they gave me in an IV while in hospital- I did have a reaction to it Breathing and severe muscle spasms { i have them all the time } but they had be wired -Maybe an injection directly into area -??? they haven't done anything yet such as Ultra or X ray - I will have to wait till monday ---Thank You for your imput and i will keep you informed if you want-Need to stop typing just burned thumb and next two adjoining finger tips GRRRRR -- aren't i just a ball of Fire Thanks Again Jet and Casey

Lure2 profile image
Lure2

Hi,

Thinking of you and Casey!

I am afraid that does not help though .......... I wish my thoughts would be "healing". Will start trying.

Kerstin

jetjetjet profile image
jetjetjet in reply to Lure2

AWWW my Buddy - you are healing with your warmth and concern. PCP office should be calling Monday morning .

You may also like...

Burning feet but nothing to see.

progressed over the weeks to under the foot and at times under both feet. I know there is no point...

Rosacea, cracking teeth, and tingling feet! :-/

with this? Also my hands and feet tingle about 5-6 times a day...last for a while even while moving...

Problems with Coaguchek

some more strips and assured me that the fault was very unlikely to be with the actual machine. I...

Problems with chronic kidney disease?

most of you. My question is this: Last fall I had a kidney removed due to carcinoma, was very...

ANTIPHOSPHOLIPID SYNDROME AND HIP PROBLEMS.

brief question!!!! ........ does anyone know if you can get terrible pains in both hip joints due to