Legs and feet swelling

[Victoriaitsnosecret]

I have a pulmonary doc and I see a rheumatologist. I'm part of an HMO. I haven't been to a doctor that specializes in vasculitis. I'm starting to think I should. What's your experience? Thank you.


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[jakekell]

That maybe the thing to do is see a vasculitis doc as I have never seen one. My Rhemy had to retire after surgery gone wrong. We are in a small area when in MI/not found one I want. I am going to look for one in Naples next winter.

I am overall doing very well going to "Healthy living Dr." He does blood test for everything you can imagine. His deal is why is your body doing this not so much that I am a weggie. He does monitor my levels he needs to, but is trying to fix my body to work right, digestion etc. He put me on the Naltrexone 4.5 (LDN), which helps open the cells while your sleeping among other things lots of info on internet. He uses this on all his autoimmune and this has helped me so much. I have been on it for 4 1/2 years, no infections except for one sinus infection that really wasn't to bad.

The meltrex was killing me and lots of infections couldn't do it. My legs/feet are not changed by it, but from what others have said my aren't as bad as some just uncomfortable. I have some bad days, what I now call bad days with my joints, but nothing next to what I did. I still get very tired that is better, but not apparently going to get a ton better.
My hearing is back to where I haven't used my hearing aids in over 3 years now as I had gone completely deaf.

No one else on here seems to be taking this med, Rhemy said it won't work my pharmacist who was a researcher at one time said he is so wrong so I found a doc that uses it. I feel he has saved my life, but feel I want a Rhemy on call in case I need one for any reason including something happens to my doc as he works alone. Hopefully this gives an overview of where I have been with in in the past now 9 years.

[greenjeep]

This could point to kidney disease. Any recent bloodwork (creatinine) or urinalysis?


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[jakekell]

Yes I both of the test you mentioned above one last summer and the other last October both showed kidney function is good.

[greenjeep]

That's good, but there is obviously water retention. It might be worth an update blood test. My creatinine went from 0.9 to 6 in a little oner a month at the end of 2012. Maybe a diuretic is called for??


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[jakekell]

I will be going back to the doc in May will ask for it to be checked. I had several replies from other weggies that seem to have the ankle leg swelling so it could be just one of those peeps. I will have them look to see if the kidneys are still stable, thanks.

[Tom]

You do need to see a Dr that specializes in auto immune diseases and that would be a rheumatologist. I have lots of leg and ankle swelling. Also have swollen hands. I have renal disease and 20%of my kidneys are destroyed from the wegs. For the kidneys I see an internist who specializes in internal medicine. She also adjusts my diabetic meds and insulin. My lungs are gone from the Wegs and I am on 02 and in severe stage COPD. I see a pulmonary Dr. My sinus' are shot from the disease. It has affected the left ventricle in my heart. My SIL,s who go to a "Healthy Living Dr" for just being well and he puts them on a no sugar diet and then he switches to a low protein diet, and then he my do a 7 day colon cleanse. There is nothing wrong with them and never has been so they feel like their method is better than paying a Dr for treatment. Big difference in making you well if you are sick as opposed to keeping you well if you are otherwise healthy. My dr has me on Lasix for the water retention and a low sodium diet. I'm monitored for creatin levels and checking blood cells because I am a cancer survivor but at a greater risk with the Wegs treatment I get. O all my Drs, when I go to see them I get the same test so I am monitored monthly. Here is what my Reumy told me when my first Pulmo Dr left unexpectedly. I chose one in the same office and he was also new, he was also temporary and they hoped to hire him and other permanent. My reumy said that I could do what I want but suggested I find a pulmo that is hired on a full time basis and not just 6 months at a time. He said the reason is, Wegeners is serious business and if I relapse, They will have to bring new Dr up to speed on " MY" health. They work as a team and if I have a breathing issue, it would be helpful to have a pulmonary Dr that knows me and my history immediately to begin treatment. This would apply to all the Drs I have.

Also, my wife works in an organic spice industry and they have everything from soup to nuts. I have arthritic pain from my Wegs but not arthritis. My wife says to the Dr " I was told that Turmeric will cure or alleviate arthritis pain, Have you ever heard of that?" My Reumy, being from India just chuckled and told her that if it was a cure for arthritis, there would be no arthritis in India where he was born! So there was the turmeric and other cures that were organic or wives tales about making people well. While there are some, most are just myth. He told her that if one believes they are feeling better with a spice or root etc. then by all means keep using it but a Dr should be involved with the disease! I have to agree.

[acker]

Hi Mary,
Get it checked out, my Doc always tells me off, if I don't tell him things, I used to think I was moaning all the time, and he said "no it's called looking after yourself" (he's a great guy ) I was very lucky the first thing I knew anything about WG's was when I was taken by ambulance to hospital at 3am with both legs swollen up to the hips and bleeding from everywhere.
They sorted me out ok, so I'm sure they can do it for you too. When I came out of hospital I couldn't walk for 3wks, now I'm back riding my motorcycle. I've heard people say about WG's and age related things, but a lot of the time, what works for me is the way you think about things. I'm seventy this year, and still don't know what I'm going to do, when I grow up.
Take care Acker

[jakekell]

Tom,

Thanks for the advice my husband and I just talked about a new Rhemy last night. I agree with you that I need a new one tried 2 after my Rhemy retired both duds. I am not in a large area when at our home up north so it hasn't been much to choose from. When in Naples there are many so will look into one here.

My lungs have been good so far, but I know your right more docs need to be involved. I am a lot better with the "healthy living doc" I have been with for now close to 4 years than I was before so will use him also, but I am sure your right about covering all bases. Thanks it most likely was what I needed to hear.

Mary

[jakekell]

Acker,

Wow that was a really bad start of this lovely WG's. I have been very lucky that I wasn't in that kind of shape even though went totally deaf. That got all the docs attention along with the pain in my head sinus. I am also just around the corner from 70 also do understand about not growing up my husband/I try to go from one fun thing to another to avoid growing up!

Mary