Sticky Blood-Hughes Syndrome Support
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Continuous swollen leg

One very swollen leg , and foot, hospital says it is due to being old. I have LA and no specialist. Leg has been like this for one and a half weeks. Any suggestions?

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My suggestion would be to try and see the nearest recommended specialist, that others suggest, and if that is not possible, attend somewhere with relevant medical papers, we could find you some, clearly you need help. MaryF

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As an as side my husband and I looooove Mrs Slocum (sp?) We still watch all the reruns of "Are you being served" but no one can compete with Mr. Humphreys!!

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I do not understand the diagnosis. Your leg is swollen because it's "old?" Why is your other leg not swollen? Is it a different age?

Apologies for my sarcasm, but I don't know who you saw, but it sounds like a junior doctor who doesn't know anything! Is your leg hot? Is it red or looks inflamed? Are you running a temperature or have any other symptoms?

I would return to the hospital & ask to see a consultant, or at least a senior registrar. You can explain that the doctor dismissed you but with your medical history, you need to see an experienced doctor, expert in soft tissue at the very least. Did the doctor suggest a doppler to check whether there is a DVT?

With good wishes,

Ros

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I love your joke! You are so very true and to tell you the truth in think this doctor only saw my age and when I swung my good leg up , which I had dangling down waiting to go, the elastic on my sock left a mark so he assumed it was swollen as well but it was not! My husband and I were so tired and disillusioned after 14 hours of sitting there that I couldn't wait to just leave. He was positive that at 66 you have this stuff happen all the time. My face closed the case :-(

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I took a chance on the joke! As I said, the doctor doesn't know. That's OK not to know. A good doctor would say, "but I know a doctor who will know . . "

You mustn't ignore your leg, even though you are understandably tiredand frustrated.

With good wishes,

Ros

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Hi,

Three weeks ago you were in a hospital for your leg.

Is this a new visit to the hospital with the same leg? Sorry but I do not understand how the Doctor can say that the leg is swollen because you are "old".

Could you ask someone you trust to help you find a Specialist. I am worried as I am afraid that you are not taken care of and treated the way you should be. Are you on Aspirin now?

Best wishes to you from Kerstin in Stockholm

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On nothing. After the bariatric surgery I was told no aspirin and no anti inflammatories , ever. The problem is with the same leg and is from the knee down.

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If they’ve ruled out DVT, which they should, I would offer a possibility of may thurner syndrome or a similar vein compression condition. I would’ve thought they could’ve at least done an ultrasound or CT to identify the root cause, especially if you were recently admitted.

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They did an ultra sound and said they saw nothing but said my veins are leaky?

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My left leg swells from time to time due to inflammation from Arthritis in my knees. The leg swells around the knee obviously, then spreads down to the ankle and up my thigh as the swelling has to go somewhere. It's not red or hot but is considerable larger than the right leg. It's not constant though, it comes and goes but can last for over a week at a time.

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Thank you everyone for your encouragement and support. I have some good news for a change I may have found a specialist. As I mentioned before I have been in touch with the Ontario Lupus Society and they helped me get an appointment to see one of their specialists. Not sure yet what the date is I'm just waiting. As for my leg I am still having issues but I went to the pharmacist and asked if he knew of anything that might help me. He suggested an over the counter drug that Canadians were not able to get until recently. He said he has customers that would have him bring it in because "they swear by it". I bought some and gave it a try and it has helped just not completely. My leg and foot has gone down to half and the pains have stopped. It is not a cure but at least I am not crippled up anymore and don't wake up all the time with so much discomfort

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Oops sorry I didn't give the name lol! Must be foggy brain! The brand name is Antistax it contains calcium phosphate anhydrous, colloidal silicon dioxide, croscarmellose sodium, crospovidone, glyceryl tristearate, hypomellose, iron oxide red, magnesium stearate, microcrystalline cellulose, purified water, talc, titanium dioxide. I have no idea what most of these are but do recognize some. Since I am not on blood thinners then there is no contraindications with my other meds.

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I notice you have changed your picture!

Good !.......... if you have found a Specialist who knows what to do with you as to your APS.

I want to tell you that some of us (like me) have micro-emboli or microclots and they are not seen on a Scan of today as they are too tiny.

Let us know please how it goes for you. Give my regards to your husband also!

Kerstin

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