What about iniyial symptoms of the extremities anyone?

[jhollo9]

Hi,
I too am writing for my boyfriend of a few years now who has been in the hospital for the last 2-1/2 weeks. He has been diagnosed with Wegener's because they found spots on his lungs on a CT scan, but is very confusing to us. His symptoms started out with his feet and fingers going numb and becoming very painful. Has anyone had this happen to them? The docs do say that it is not a common symptom of WG which is confusing to them too. We just don't know where to turn. We are in an Everett Hospital and would like to see someone in Seattle or elsewhere if we have to but he cannot even sit upright for more than an hour due to the pain. His toes on the right side are black (the last 3) and his fingers on his right side are blue. It has gotten a bit better but will not go away. He is on prednisone and cytoxan.

Any help or comments would be greatly appreciated. Any doctors in this area I could possibly call that anyone knows of would be of great help also. We are so afraid of him losing his toes.

Thank you,

jhollo9

[NikkiNicole]

Hello!
Wow. His symptoms sound strange to me. I really don't know about digits turning black! I have joint pain. I am only in my 30s and suddenly I couldn't walk because my hip joint was inflamed. Today, I sit here with extreme joint pain on the right side only but it's not as bad as it was yesterday. So ... I don't know.
I would keep asking questions and demanding answers. I need to learn to do a bit more of that myself but that is the key advice that people keep giving me!
I hope he starts to get some relief soon.

[Alias]

If you are in Everett, WA you could consider consulting with the rheumatology clinic at Virginia Mason in Seattle. Good people there.

[Dirty Don]

Hi jhollo, welcome. The spots on his lungs don't necessarily indicate WG altho they are usually present. The docs need a biopsy in order to be accurate about the dx. Not that they're wrong right now, but it doesn't sound like this is WG. While neuropathy is common, the blackening of the digits is more like frostbite, a lack of oxygen/blood to the area. If that's WG, then it's new to me. If he can bear the pain, get him in a transport and to another hospital, maybe Alaska Tom's place...they are good. Best of luck to you.

[vdub]

Actually, I'm going to go against the tide here. Extremity pain can be a classic sign of wegs , particularly when coupled with a granuloma found almost anywhere. I have a friend with wegs (dx'ed a yr before me) and his primary symptom was very painful extremities. Even the weight of a sheet on legs was intolerable. So this could be a perfectly good DX.

However, as we all know and have always said, wegs is never diagnosed, but everything else is ruled out until its the only reasonable option left.

On edit: I should add, since no one else has yet... Don't let what you see on the internet scare you. Much of that information is out of date and their have been huge advances made in the treatment.

Also, if its not wegs, but some other type of AI disease and they treat it as wegs, little ground will be lost. Most treatments for AI diseases seem to be pretty much the same; high dose steroid like prednisone and an immune suppressant like methotrexate.

If a rhumetologist is not already on your team of doctors, get one. AI diseases is in their corner.

[jhollo9]

Thank you so much. The rheumatology doc in Everett has now said it could be part of diagnoses of several AI diseases going on. Sounds like they are not exactly sure themselves either. But right now the biggest scare is he might lose his toes. There is slight improvement daily which is good. Yesterday he had Botox injections in his 2 toes and 1 finger so we will hopefully see if this will improve things. It's a temporary fix but any relief would be great. Yes, they do say his pain is like that of having frostbite; that painful. They have given him blood-clot busters, blood thinners, etc, etc. Yes, if we can get him out of the hospital, we will get to a Seattle Rheumatology Physician.

Thank you so much for any and all info you can provide.

[annekat]

I see doctors in Olympia, and should probably be going to Seattle. I've heard good things about both the Virginia Mason rheumatology clinic and also the one at the University of Washington med school teaching hospital. There are docs in both those places who are competent in treating vasculitis. Also, nationally known docs are available for free consultation with your doc at this site: VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/) .

[MikeG-2012]

Hi,
I too am writing for my boyfriend of a few years now who has been in the hospital for the last 2-1/2 weeks. He has been diagnosed with Wegener's because they found spots on his lungs on a CT scan, but is very confusing to us. His symptoms started out with his feet and fingers going numb and becoming very painful. Has anyone had this happen to them? The docs do say that it is not a common symptom of WG which is confusing to them too. We just don't know where to turn. We are in an Everett Hospital and would like to see someone in Seattle or elsewhere if we have to but he cannot even sit upright for more than an hour due to the pain. His toes on the right side are black (the last 3) and his fingers on his right side are blue. It has gotten a bit better but will not go away. He is on prednisone and cytoxan.

Any help or comments would be greatly appreciated. Any doctors in this area I could possibly call that anyone knows of would be of great help also. We are so afraid of him losing his toes.

Thank you,

jhollo9


Before diagnosis, I had been to the ER twice with joint pain and numbness. Now that I've been diagnosed, I've learned that traveling rheumatoid-like issues are a common occurrence with Wegeners. One day, it was my knee, one day my ankle, another day, both hands, another day, my jaw and face, another day the other knee, etc., etc.,etc.

I just found out that I have peripheral neuropathy in my feet and legs. Another wonderful side effect of possibly: Levaquin, Cytoxin and/or Avalox--all drugs we take for handling the symptoms of this wonderful disease!

So, I must say that I am sorry, but I am not surprised that he has pain and numbness in his extremities.

[vdub]

I've heard good things about both the Virginia Mason rheumatology clinic and also the one at the University of Washington med school teaching hospital.
Our son has juvenile diabetes and went to VM when we lived there 20 years ago. His doctor was really excellent, but left VM to join a research firm. Later, we found out he was on the team that developed Cialis.

[annekat]

[/COLOR]
Our son has juvenile diabetes and went to VM when we lived there 20 years ago. His doctor was really excellent, but left VM to join a research firm. Later, we found out he was on the team that developed Cialis. Pretty important research, I guess.... ha, ha. Well, I was BORN at Virginia Mason, so that makes it a pretty good place in my book! :wink1:

[kmac14]

Before diagnosis, I had been to the ER twice with joint pain and numbness. Now that I've been diagnosed, I've learned that traveling rheumatoid-like issues are a common occurrence with Wegeners. One day, it was my knee, one day my ankle, another day, both hands, another day, my jaw and face, another day the other knee, etc., etc.,etc.

Same here. Migratory pains. I was a teenager and they just didn't take it seriously when I said that the pain would flit from shoulder to elbow to each joint on the finger to my hip to knee etc. at first it was like a line was drawn down the centre of my body and it only affected the right hand side of me. Later, all over and I never knew which joint it would be when I woke up in the mornings. That went on for months. Also had raynauds and hands would go white if they got too cold too quickly.

[annekat]

Same here. Migratory pains. I was a teenager and they just didn't take it seriously when I said that the pain would flit from shoulder to elbow to each joint on the finger to my hip to knee etc. at first it was like a line was drawn down the centre of my body and it only affected the right hand side of me. Later, all over and I never knew which joint it would be when I woke up in the mornings. That went on for months. Also had raynauds and hands would go white if they got too cold too quickly. I had the joint pains, too, before diagnosis, but they didn't migrate or present separately on opposite sides of the body so much, as they seem to with others. Everyone is a little different. I found that if I was on 5mg. of prednisone or more, I had no joint pain. I'm above that dose now, so I have none currently, but will have to anticipate that that if I ever get below 5mg.

[Rose]

I had the joint pains, too, before diagnosis, but they didn't migrate or present separately on opposite sides of the body so much, as they seem to with others. Everyone is a little different. I found that if I was on 5mg. of prednisone or more, I had no joint pain. I'm above that dose now, so I have none currently, but will have to anticipate that that if I ever get below 5mg.

I remember visiting many doctors with migratory abdominal pain. Needless to say I was looked at as if I was mad and negative test results colonoscopies, scans blood test all returning normal results confirmed their suspicions. When the disease spread 17 years later, one of the many symptoms was migratory pain in my arms and legs. Usually when it occurred on one side I would get the exact same pain on my other limb, same area only for it to disappear and occur somewhere else. They didn't have to take my word for it this time.... they could see the swelling and inflammation with their own eyes. But as my condition deteriorated my symptoms in my extremities became much worse. I got acute tendonitis in my Achilles Tendons, first one side then the other a day or so later. I was crippled from this and it wasn't going away. I was going downhill fast at this point and was soon hospitalized with that and all my other symptoms. WG was soon diagnosed with major organ involvement.

A year or so later, now in remission and well enough to research this terrible disease that has almost killed me, I discover that migratory pain is a common symptom in vasculitis.

Rose

[carriej22]

I didn't read every post, but my toes turned black and my hands still go numb and painful. They told me that the hand thing is neuropathy and luckily as soon as I received treatment my toes fixed themselves up. I still have tingly hands though, one quite a bit worse than the other.

[mrtmeo]

I remember visiting many doctors with migratory abdominal pain. Needless to say I was looked at as if I was mad and negative test results colonoscopies, scans blood test all returning normal results confirmed their suspicions. When the disease spread 17 years later, one of the many symptoms was migratory pain in my arms and legs. Usually when it occurred on one side I would get the exact same pain on my other limb, same area only for it to disappear and occur somewhere else. They didn't have to take my word for it this time.... they could see the swelling and inflammation with their own eyes. But as my condition deteriorated my symptoms in my extremities became much worse. I got acute tendonitis in my Achilles Tendons, first one side then the other a day or so later. I was crippled from this and it wasn't going away. I was going downhill fast at this point and was soon hospitalized with that and all my other symptoms. WG was soon diagnosed with major organ involvement.

A year or so later, now in remission and well enough to research this terrible disease that has almost killed me, I discover that migratory pain is a common symptom in vasculitis.

Rose

Hi Rose,
Were you ever tested for MRSA?

[Rose]

Hi Rose,
Were you ever tested for MRSA?

No. Wondering why I would be. Is there a connection?

Rose

[mrtmeo]

No. Wondering why I would be. Is there a connection?

Rose

Yes, there has been some links
http://www.wegeners-granulomatosis.com/forum/general-wg-chat/4328-could-mrsa-responsible-aav.html

My mom had mrsa colonized.
I used Lugol's 5% solution to distilled water 1:100 in a neti pot and she became mrsa negative.
Also, her wbc came down from an average of 12,000 to 6,400.
Her achiles tendon started to rupture and colloidal silver stopped it, but I didn't know that was the problem until months later.

[Rose]

My WG was definitely triggered by a severe case of gastroenteritis. My son picked it up at Nursery school and both my husband and I caught the bug, I had been a very healthy person before then so why did this trigger WG in me whe both of them recovered? I dont know which bug caused the gastroenteritis but there is no doubt in my mind that that infection triggered my illness. At that particular time in my life I was under severe unrelenting stress for abut a year. I think that if i had not been so stressed I would have recovered as my son and husband did.

Rose

Probably a genetic predisposition there also as I have a sister with RA

[John]

GREAT blog: Keep fighting.

[mrtmeo]

My WG was definitely triggered by a severe case of gastroenteritis. My son picked it up at Nursery school and both my husband and I caught the bug, I had been a very healthy person before then so why did this trigger WG in me whe both of them recovered? I dont know which bug caused the gastroenteritis but there is no doubt in my mind that that infection triggered my illness. At that particular time in my life I was under severe unrelenting stress for abut a year. I think that if i had not been so stressed I would have recovered as my son and husband did.

Rose

Probably a genetic predisposition there also as I have a sister with RA

I think the disease is hiding in our cells and only comes out with severe immune suppression, especially when under stress.
Some people get symptoms shortly after vaccines, like my mom.