In process of possible DX and have Questions

[Morrison]

I feel so fortunate to have found this forum. I am inspired by everyone's courage and support and hopeful you can provide some direction to me. In FEB of this year I was a very healthy 41 yr old male who worked out with high intense 3x per week. Out of the blue I felt a general malaise and lost my energy. Thinking it was temporary, I didn't worry much. I then started experiencing some chest and throat inflammtion(my term) that would occur randomly. Felt like asthma which would come and go and occasionally severe dysphagia. I described it to my DR as a choking like feeling right at the base of my neck along with chest tightness with occasional wheezing. Soon after I started having low grade fevers and flushing. I lost 14lbs off of my smallish 150 lb frame. I had a CT scan and the DR said everything was fine only "benign granulanomas, and a mucous plug" which he jokingly said I needed to cough up...but didn't make sense at the time because I didn't need to cough. After the symptoms continued and I complained more about my throat swelling he (endo) ordered a Barium Swallow. After it was complete the resident while reviewing the pics asked "Sir where are you from" in kind of an ominous tone. I told him and then he left the room. He came back about 15 mins later and stated he was sorry if he scared me but he thought I had first had a hiatal hernia but upon further consult with the DR he said they were granulanomas(again!). I immediately went back to the DR stating that it had been 2 months and over many tests the only thing that kept showing up was granulanomas. I still feel horrible and have asthma like attacks with throat swelling. He assured me that the granulanomas were perfectly normal and benign. Then I started developing some neuropathy in my lower legs from the knees down. Constant fasicualtions and numbness. When I moderately exercise, like walking(because thats the best I can do with my fatigue) my veins start swelling up and get painful, like a burning sensation. I have had a lot of muscular wasting (with loss of weight) and combined with the fasiculations, I went back to the DR. He said everything was fine but you need to see a neurologist. I reminded him of my main symptoms: fatigue, weight loss, lung and throat inflammation/flares, reduced pulmonary capacity, and now some type of lower leg neuropathy.by now I had become suspicious of Wegeners because of my symptoms and then finding out that the neuropathy and vascular issues are Wegeners too. He looked right at me and without me barely getting the words out. He said "you don't have wegeners." I had an EmG Monday with no results yet other than DR said no MND such as ALS. Haven't lost any strength, just the symptoms I have had from onset are worsening. I have a dry cough on occasion but my lungs burn and from time to time get asthmatic sand I have to go in the bathroom and run hot water to open the airways. It's been 4+ months, same symptoms, worsening vascular condition/ neuropathy in legs along with lung impairment. Should I get a second opinion

[drz]

Yes, ASAP, preferably from some one considered an expert in diagnosis of GPA. One of the large specialty clinics (Mayo, Cleveland Clinic, John Hopkins etc) might also give you a better idea of what is wrong and what they can offer for treatment to help you feel better.

[Lightwarrior]

Morrison,
Yes, you should get a second opinion immediately. Don't wait, I don't know where are from but here is the link for the Vasculitis Foundation. You can find expert doctors who are willing to consult for free or see you. Please don't wait another minute. We will talk more later, but first you need to be seen.

[Lightwarrior]

Morrison,
Yes, you should get a second opinion immediately. Don't wait, I don't know where are from but here is the link for the Vasculitis Foundation. You can find expert doctors who are willing to consult for free or see you. Please don't wait another minute. We will talk more later, but first you need to be seen.

OOPS, here is the link Vasculitis Foundation | The Vasculitis Foundation supports and empowers patients through education, awareness and research. (http://www.vasculitisfoundation.org/)

[annekat]

Welcome to the forum, Morrison. Like me, you found it before you even knew you had Wegener's (if you do). I wouldn't trust that doctor who says categorically that you don't have it. How does he know that? I agree about finding a specialist to see and/or consult with, but I'm wondering if that takes more time than you should wait for a second opinion. I would look for a rheumatologist or pulmonologist who can convince you that they are at least equipped to handle your case for the time being, who can order the necessary biopsies and blood tests to get you diagnosed, until such time as you are able to arrange to see or consult with a true Wegener's specialist. Or maybe you live close enough to the specialists to see one soon. If you tell us where you live, perhaps someone can point you in the right direction.

As someone who doesn't know much, I still question the term "benign granuloma". I barely know what a granuloma is, but I thought a granuloma was a granuloma and a sign of trouble. Can someone tell me, is there such a thing as a good or "benign" granuloma?

[Dryhill]

Morrison, from your description I would strongly urge you get a second opinion and as others have said find a doctor well versed in Vasculitis

As a matter of interest has your doctor done any blood tests such as ESR and ANCA (while these are not always definate indicators of WG sometimes they can be)? Also when you say "my doctor" is this your general practioner or someone you have been refered to? If he is the former then it extremely unlikely that he has ever come across a patient with our beloved WG - my general practice has about 5,000 patients of which four of us have some form of Vasculitis and I am the only weggy.

Jim

[Dirty Don]

my general practice has about 5,000 patients of which four of us have some form of Vasculitis and I am the only weggy.Jim

My internist has only seen ONE Weggie in 30 yrs of practice...MOI! Another new & younger internist in the clinic read about us in a book somewhere in med school. Sheesh...

[Dryhill]

My internist has only seen ONE Weggie in 30 yrs of practice...MOI! Another new & younger internist in the clinic read about us in a book somewhere in med school. Sheesh...


Dirty Don, that is what makes us so special, anyone can have flue or a bad back but we get to have all the fun of never quite knowing what is going to happen to ourselves. Also look at all those fantastic drugs, like pred with all their wonderful side effects. You almost sound like you do not enjoy being a weggy. :unsure:

Jim

[Dirty Don]

You almost sound like you do not enjoy being a weggy. :unsure:

LOL, I'm assuming that you're being sarcastic...but, most of the time...NO! Sometimes I appreciate the attention I get in a medically narcissistic way...LMAO! I do enjoy who I've met, especially on here, and what I've learned, and how I've learned to fight even harder...but I don't enjoy the day to day skirmishes with this stupid little disease that came out of nowhere. If the docs had told me I have cancer, TB, lung disease, or something that I possibly had something to do with in my past, I would say 'my bad' and battle on...but I was stupefied...and until I was conscious again and ready and determined to fight this ****, I didn't know what was going on. And even though I am in a remission right now, I know this is a fight to the end...I'm ready! I won't win, but I'll give it a helluva shot! It seems I've learned more from this disease in the last year than I had in the last 63 years...and for that, I am happy & more thoughtful...every day! But, thanks for the poke, woke me up tonite...gave me something to rant about...LOL...and thanks for listening...hehe!

[Dryhill]

...but, most of the time...NO! Sometimes I appreciate the attention I get in a medically narcissistic way...LMAO!

Brilliant. Dirty Don, your sense of humour is as bad as mine, I nearly choked on my cup of tea when I read that narcissistic remark.As for other remarks I know what you mean.

Jim

[Morrison]

Thanks to everyone for your support. I have an appointment with a pulmonologist next week and I will update ASAP. I really appreciate the comments and support. I have had an EsR which was low, thank goodness but not the ANCA. It's like I have a mass sitting in my lungs and base of my neck/throat that has reduced my pulmononary respiration and sometimes gets irritated like asthma and then the difficulty swallowing. Couple this with my severe fatigue, fasiculations, and tinnitus.......??? Thanks again and I will update soon!

[annekat]

Thanks to everyone for your support. I have an appointment with a pulmonologist next week and I will update ASAP. I really appreciate the comments and support. I have had an EsR which was low, thank goodness but not the ANCA. It's like I have a mass sitting in my lungs and base of my neck/throat that has reduced my pulmononary respiration and sometimes gets irritated like asthma and then the difficulty swallowing. Couple this with my severe fatigue, fasiculations, and tinnitus.......??? Thanks again and I will update soon!I wonder if you could have something like tracheal stenosis, a narrowing of the trachea that some people with Wegeners get, and I think sometimes it's further down in the bronchii. I don't have it myself, but I know there is a whole section on it in the archives... you'll see it on the main forum page if you scroll down. In fact, I'd recommend a lot of browsing and searching of past posts on the forum, in whatever areas you are most concerned about. I have learned most of what I know about Wegener's by doing that and reading the forum daily. Good luck with the pulmonologist and I hope he is more open than your family doc to finding out if Wegener's is what you have; he can order the necessary blood tests, biopsies, xrays, CT scans, etc. and I'm sure could also do a scope for possible stenosis.