Re: Re: New member - anyone with burning knees?

[Guest guest]

I don't have any info on CVID but will tell you that the people here are very

good and can be informitive on RA, FM, and Lupus and maybe some other auto

immune disorders. But we are one big family here and don't mind if you rant or

whine. Sometimes it helps to get our issues out and have others as a " sounding

board " it tends to help to hear what others have to say and sometimes get

suggestions on how to do something that we as a single person can't figure out.

[ ] Re: New member - anyone with burning knees?

Hi, - funny you should ask - several docs have looked at me and

asked if I had been to the Mayo Clinic. At first, I thought they

were kidding, but they weren't. No, so far, I've never been anywhere

fancy. But perhaps I will think about that - I'll have to see if my

insurance (Aetna) would pay for it. I know that people with

erythromelalgia often go to Mayo, just because so few docs know what

it is. Unfortunately, after Mayo diagnoses erythromelalgia, it

sounds like they don't have many good suggestions on how to fix it.

With CVID, some folks have joint inflammation - but it's hard to

figure out if my symptoms are caused by that, RA, Behcet's,

erythromelalgia, or sarcoidosis. Who knows - I just want the

diagnosis to be something that has a treatment other than elevating

my legs - I have things to do, like someone else mentioned.

I am very aware that my symptoms could be much worse, and I hate to

whine since I know that some folks on this discussion board would

love to have my problems.

Thanks for the suggestion - it's a good one.

> > Hi All,

> >

> > I was recently diagnosed with CVID, will be starting IVIG in

January,

> > have a long history of immune system dysfunction and infections,

want

> > to learn from the experiences of others. Does anyone else have

> > symptoms like these that accompany CIVD?:

> >

> > After standing or walking for more than a few minutes, my knees

get

> > BRIGHT red, painful and begin burning. At times, you can feel the

> > heat through my clothing from several inches away. My knees swell

> > up, and if I don't get off my feet, the swelling and burning goes

> > down to my feet. At times, it looks like I have elephantiasis. I

> > often run fevers, and they tend to get the burning started. I

> > sometimes get burning in the joints of my hands, and my hip joints

> > are extremely tender (not sure exactly what causes that - always

> > assumed it was just arthritis.)

> >

> > For many years, I have chalked up my symptoms to chronic Lyme,

which

> > I have probably had for 43 years - it's really hard to eradicate

once

> > it passes the blood-brain barrier. I only got diagnosed with it

> > about 7 years ago, mainly based on the existence of spirochetes

in my

> > blood. Since I was a kid, I've had immune system problems - I was

> > sick with strep or staph infections constantly - I had strep for 3

> > years straight, and the docs thought it was due to having scarlet

> > fever at age 4. I was diagnosed with rheumatoid arthritis at age 7

> > (now believed to be incorrect). I was unable to walk for several

> > months, and I had the swelling, redness and pain in my knees

> > primarily - I don't remember if it burned. My thyroid gave out on

me

> > when I was 14, which led to a diagnosis of Hashimoto's

thyroiditis.

> > As an adult, I have fought repeated respiratory infections which

> > often turned into pneumonia. Since I was very young, several docs

> > have tried experimental autogonous vaccines on me in the hopes of

> > building up my immune system. I've been on oral antibiotics for a

> > good bit of my life and in 2001, I was on IV antibiotics for 10

> > months through a PICC line to combat a body-wide staph infection.

My

> > infectious disease specialist gave me IVIG infusions years ago

until

> > the insurance company complained. What else - I've had shingles,

> > weird illnesses like leishmaniasis, and I have been diagnosed with

> > fibromyalgia. Last year, I had 11 angioedema episodes - only the

> > first was life-threatening because my airway began to close. Also,

> > during the first episode, in addition to the swelling of my face,

it

> > was also bright red and burning, and even after the swelling went

> > down, my face peeled at least five times, with oozing, crusty

scabs -

> > real attractive. Now I wonder if the angioedema was accompanied by

> > erythromelalgia (EM). Coldness on my joints is intensely painful,

so

> > I don't use that to deal with the burning. Muscle twitches galore...

> > I also have high blood pressure (treated with meds) and get

exhausted

> > pretty easily. I must stay on antibiotics or I get pneumonia

within

> > days, but even on the antibiotics, I still get skin lesions which

I

> > assume are staph.

> >

> > At this point, I'm open to suggestion - anything to reduce the

pain,

> > swelling, and heat in my legs other than elevating them, which

works,

> > but which is not conducive to making a living or functioning on a

> > basic level. I have to plan things carefully in terms of parking

> > downtown or estimating how long I will be standing doing normal

> > things. Even shopping at the grocery store is a challenge

(probably

> > partly because thus far, I have stubbornly refused to use a

scooter

> > or a wheelchair). So far, numerous docs have declined to diagnose

> > the burning knees - all have said they've never seen anything

like it

> > and they've also never seen EM in person. Benicar seemed to help

> > with the problem, but now I can't take it because of the

angioedema

> > risk.

> >

> > Anyone else relate to this weird constellation of symptoms? Anyone

> > think that the EM symptoms are part of CVID and may resolve when I

> > start IVIG?

> >

> > Any info or pointers would be welcome.

> >

> > Thanks!

>

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[Guest guest]

Hi, .

Mayo Clinic (MN location) and s Hopkins are good bets if your

diagnoses are in question. They have high volume and can put a team on

your case. For example, you could be seen by an immunologist, a

rheumatologist, an endocrinologist, an infectious disease specialist,

and a vascular physician. They will compare notes and come up with the

best diagnoses they can. They can also recommend treatment which your

local physicians can implement.

In our group, all problems are important. Talk about them here anytime.

Not an MD

On Mon, Jan 12, 2009 at 3:55 PM, tiredatlmom <bsintolerant57@...> wrote:

> Hi, - funny you should ask - several docs have looked at me and

> asked if I had been to the Mayo Clinic. At first, I thought they

> were kidding, but they weren't. No, so far, I've never been anywhere

> fancy. But perhaps I will think about that - I'll have to see if my

> insurance (Aetna) would pay for it. I know that people with

> erythromelalgia often go to Mayo, just because so few docs know what

> it is. Unfortunately, after Mayo diagnoses erythromelalgia, it

> sounds like they don't have many good suggestions on how to fix it.

>

> With CVID, some folks have joint inflammation - but it's hard to

> figure out if my symptoms are caused by that, RA, Behcet's,

> erythromelalgia, or sarcoidosis. Who knows - I just want the

> diagnosis to be something that has a treatment other than elevating

> my legs - I have things to do, like someone else mentioned.

>

> I am very aware that my symptoms could be much worse, and I hate to

> whine since I know that some folks on this discussion board would

> love to have my problems.

>

> Thanks for the suggestion - it's a good one.

>

>