symptoms of WG long before diagnosis.

[alexciasmom]

So having learned and experienced eg symptoms and looking back over my life. I have noticed some symptoms coming and going threw out my life. Is this weird or is it me???? Story's please.

[Al]

Yeah. I won't bother to tell my story again, but you can find it at http://www.wegeners-granulomatosis.com/forum/weggies-stories/2420-recapitualtion.html.

Al

[alexciasmom]

WOW!! Ok so I'm not crazy. Thanks..

[pberggren1]

Of course you are not crazy. Many people have Wegs smouldering away for years or even decades before being diagnosed.

[Dryhill]

When I look back it is clear that I had that friendly wegs dog living with me for at least eighteen months before diagnosis, being asthmatic, overwight and in my 60's a lot of the early symptoms were blamed onto other things. Two problems with the way NHS GP's work also add to the problem of mis-diagnosis:

1. Most surgeries have six or seven GP's and while patients are assigned to an individual doctor, in reality we are encouraged to see whichever doctor is avalable.

2. GP's are allocated seven minutes per consultation.

The lack of consultation time does not allow a GP to really look at what has been going on, and of course the lack of continuity means any gut feeling the GP may have does not occur. Soon after diagnosis my GP left and I was assigned to another doctor who insisted on seeing all her new patients who had unusual illness's. She has told me to always ensure I see her and to always book a double appointment, that means at long last I have a GP who knows what is going on.

Recently I discovered that though I am the practise's only WG suffferer they do have two other patients with vasculitis. I suggested that those patients should be also placed in my GP's care, which they have decided to do.

Jim

[Psyborg]

I definitely see signs looking back as well. But I don't know if they are related or just the commonalities of what I can relate back to. I know until I got sick with my first flare I really hadn't been that sick before...especially that sick with no apparent reason. But I do have strange health issues for at least 15 years before that so I have no idea if any of that is related or not.

[alexciasmom]

I remember my first wt blood cell count being done and I was 10 and it was high. I thought what is that. Well i came across some old medical records of mine going from age 13 to 24 and every cbc has it high.. Hmmmmn i wonder.

[Sangye]

Elevated WBC isn't associated with Wegs. It makes me wonder why you were having labs done during those years--were you having infections? That would certainly elevate WBCs.

[alexciasmom]

O In those years i was having issues with pap smears. And got diagnosed with type2 diabetes and hypothyroidism. Ok i am lost everything i read for wg talks about wbc and autoimmune. So im lost gain. I just feel like I get a foot hold. And WAMMM you all toss out a new one..lol. I wonder if I will ever be able to make heads or tails of this stuff..

[annekat]

Like many, I had recurring sinus infections for at least a couple of years before WG dx, preceded by a severe, antibiotic-resistant double ear infection. This was after 56 years of never having had an ear or sinus infection. I had allergies and ended up getting allergy shots for 1.5 years before dx. Prior to all that, I had some strange tinnitus and unusual fullness in the sinuses and ears as long as 10 years ago. This would come and go. As for joint pain, I started having that a couple of years before dx as well.... first I suspected it was a reaction to the Levaquin I took for the ear infection, later I had a blood test for RA markers which came up negative. I could go on and on, but yes, there were definitely strange things going on for several years before dx....

[Sangye]

O In those years i was having issues with pap smears. And got diagnosed with type2 diabetes and hypothyroidism. Ok i am lost everything i read for wg talks about wbc and autoimmune. So im lost gain. I just feel like I get a foot hold. And WAMMM you all toss out a new one..lol. I wonder if I will ever be able to make heads or tails of this stuff..
I'm not saying you couldn't have had Wegs all those years-- you definitely might have. Just saying elevated WBC's aren't an indicator for Wegs.

[annekat]

I didn't really answer this right the first time. You are talking about going way back in one's life, I think. So, even though I didn't have any sinus or ear issues early on, and did later pre-Wegs, I can say this: I was the only one in my family who had a lot of trouble with asthma and bronchial infections as a child. The bronchitis was treated with penicillin and the asthma really wasn't treated at all until I got older. I always thought the asthma was partly related to stress, as when my parents fought or I was bullied in school. I was also probably allergic to molds and pollens. Anyway, since I was the only one among 5 kids with those problems (one sister had her tonsils and adenoids out, but I didn't), and I'm the one who got Wegs, I have to wonder if there is some connection.

[annekat]

I'm not saying you couldn't have had Wegs all those years-- you definitely might have. Just saying elevated WBC's aren't an indicator for Wegs. Sangye, I get confused about all this stuff, too..... could you explain what an elevated WBC count DOES mean in regard to Wegs or anything else? I know I could google it but would like to hear it from your point of view. Thanks.

[Sangye]

Please google. I'm wiped out.

[annekat]

Please google. I'm wiped out. OK, already did, and will again. Sorry, and I hope you feel better soon....
I know you just started RTX again, so best of luck with that. :smile1:

[annekat]

O In those years i was having issues with pap smears. And got diagnosed with type2 diabetes and hypothyroidism. Ok i am lost everything i read for wg talks about wbc and autoimmune. So im lost gain. I just feel like I get a foot hold. And WAMMM you all toss out a new one..lol. I wonder if I will ever be able to make heads or tails of this stuff.. I think Sangye meant that high WBC counts can occur in lots of illnesses and conditions, as a result of different kinds of infection and inflammation. So they can happen with Wegs but they don't by themselves mean we have Wegs or another autoimmune disorder. I did google and found out the body produces several different kinds of WBCs for different purposes. I need to google again to understand it all more. Maybe Al or some other really smart person can clarify some of this a little better.

[alexciasmom]

Sangye, I get confused about all this stuff, too..... could you explain what an elevated WBC count DOES mean in regard to Wegs or anything else? I know I could google it but would like to hear it from your point of view. Thanks.

im sorry hunny. Get sleep and get better..

[drz]

Sangye, I get confused about all this stuff, too..... could you explain what an elevated WBC count DOES mean in regard to Wegs or anything else? I know I could google it but would like to hear it from your point of view. Thanks.

For me an elevated WBC meant I had a bladder infection. A low WBC meant I had too much CTX and had to reduce dosage or even take a drug vacation. During my drug induced remission my WBC stays stable in normal range. Other people might have different reactions and experiences which is why it takes a while to learn how your body responds to Wegs and the treatment so you can begin to understand what is happening and predict what you need to do about it.

[vdub]

I'm with everyone else.... I had a recurring "sinus infection" for about 2 years prior to dx plus constantly being tired. The final nail in the coffin was my head exploding from the growing granuloma. Full story is below in my sig line.... I believe 24 months is the average time for dx.

[annekat]

I'm with everyone else.... I had a recurring "sinus infection" for about 2 years prior to dx plus constantly being tired. The final nail in the coffin was my head exploding from the growing granuloma. Full story is below in my sig line.... I believe 24 months is the average time for dx. Who knows how long I would have had "recurring sinus infections" if my lungs hadn't decided it was time to get involved. Yes, about 2.5 years from ear infection to diagnosis for me. Vdub, you are a rare bird on top of already being one by having Wegs..... My lung involvement could have been a lot worse if not caught when it was, but I'll take that any day over what you've gone through with the GRH. I'm glad your kidneys, liver, and hearing are untouched, as are mine except for the hearing.

[alexciasmom]

Me two I can't remember the last time I did not have one. Just like the wg rash I have had on and off sence 6 years old...

[mishb]

I also had recurring (actually it never went) sinus infections for 18 months prior to diagnosis.

Since I was a young child I had recurring ear infections and also tonsilitis. I also remember nose bleeds and fainting spells. I think this is the reason WG has attacked these parts for me now .....nose, ears, throat and eyes (although I don't remember any childhood eye problems)

When I went for my first Rhuemy appointment after diagnosis they asked me about ear and throat infections, and also commented on the fact that I have had Glandular Fever.....still not sure whether this meant anything but they circled it in my blood test results.

For me the WBC is not part of the wegs but part of the infections in my nose and throat. My WBC have nearly always been elevated but not as high as they are now whenever I get sinus infections. My two girls have high WBC's as well even without any known infection at the time. The doctors have just put it down to ....this will be their normal WBC and then anything higher than normal will be an infection

[Sangye]

Michelle, chronically elevated WBC is not okay. That means there is an infection brewing somewhere-- bacterial, viral, fungal or parasitic. I suggest you bring your kids to a holistic doctor to diagnose and treat it. Chronic stress on the immune system can trigger autoimmune diseases and cancer. Over time the immune system weakens and becomes dysregulated.

[mishb]

Funny you say this Sangye, we spent last night at the doctors with one of my girls who now has a very nasty case of tonsilitis ..... again.
Yes another infection has brewed.

[Sangye]

Repeated tonsillitis is often--very often-- due to a misalignment in the neck vertebrae. It affects the lymphatic drainage in the entire head and neck, so the tonsils can't drain properly and become infected easily. Children who are adjusted regularly rarely get tonsillitis, strep throat or ear infections. I saw these conditions in many new pediatric patients but I can't think of any established patients who had them.

Getting your kids adjusted improves their immune function overall since the nervous system controls every part of the immune system. Of the top 5 benefits I heard from parents of kids that I treated: They rarely get sick anymore, and when they do it's no big deal.

[drz]

Repeated tonsillitis is often--very often-- due to a misalignment in the neck vertebrae. It affects the lymphatic drainage in the entire head and neck, so the tonsils can't drain properly and become infected easily. Children who are adjusted regularly rarely get tonsillitis, strep throat or ear infections. I saw these conditions in many new pediatric patients but I can't think of any established patients who had them.

Getting your kids adjusted improves their immune function overall since the nervous system controls every part of the immune system. Of the top 5 benefits I heard from parents of kids that I treated: They rarely get sick anymore, and when they do it's no big deal.

I must have been an exception since I had regular chiropractor or as we called them crack your back treatments and still had many ear infections, tonsillitis, bronchitis, sore throats etc--only ENT treatment and antibiotics helped stop them..

[alexciasmom]

See I got to thinking.
1. Hypothyroidism at 16
2. Possible carpiltunnle 16
3. Diabetes 26
4.6 years to get pregnant at 32
5. Gallbladder removed 35
6. Three miscarriage 34-36
7. Bylat capultunnle. Bylat cubicaltunnle 35
8. Wegeners 37
9. Neopathy 37
10. High blood pressure 37
sorry can't spell most of it and my phones spell check sucks.
But you think any of this is related????

[Sangye]

See I got to thinking.
1. Hypothyroidism at 16
2. Possible carpiltunnle 16
3. Diabetes 26
4.6 years to get pregnant at 32
5. Gallbladder removed 35
6. Three miscarriage 34-36
7. Bylat capultunnle. Bylat cubicaltunnle 35
8. Wegeners 37
9. Neopathy 37
10. High blood pressure 37
sorry can't spell most of it and my phones spell check sucks.
But you think any of this is related????
Nutrition, nutrition, nutrition, nutrition, nutrition.....

Every single one of these leading up to Wegener's is related to nutritional imbalances.

[Sangye]

I must have been an exception since I had regular chiropractor or as we called them crack your back treatments and still had many ear infections, tonsillitis, bronchitis, sore throats etc--only ENT treatment and antibiotics helped stop them..
This makes me think that you needed nutritional intervention (very common) and/or your chiropractor wasn't very good.

[freakyschizogirl]

I had many reoccuring symptoms before my Wegs was fully diagnosed.

First symptom was nose bleeds, constant colds and infections (tonsils, lungs, a boil) then came the sinus problems including crusting, sinusitis, amaemia, septal perforation and then collapse.

I think from the first symptom to actualy diagnosis was 3 years so my Wegs dog was friendly too and just playing with me, not actually attacking me. Within the first year of symptoms i was referred to a Rheumy who told me i possibly had Wegs or Lupus but he couldnt tell, as apart from my nose i had no other symptoms and my bloods went from positive to negative and he never did a follow up bloods after the negative.