Hi from NJ

[tkd7]

I found this community while searching the internet for info on WG.

My rheumatologist strongly suspects that I have WG. About a month ago I visited a neurologist as I have been having numbness sensations in my foot and hand. The nuerologist ran blood tests, nerve conduction study and MRI. The blood test came back high for PR3 AB (twice), my conduction study indicated potential for vasculits, and my MRI showed arthritis in my spine. She directed me to a rheumatologist.

I saw the rheumatologist this past Monday. She reviewed my case and said that until proven otherwise she thinks I have WG. She asked for a chest X-ray and additional blood tests. The X-ray was negative (good news), so now she wants a chest C T scan (I will do that next Monday). She called me yesterday to connect me with a doctor to do a nerve biopsy (to be scheduled). I should have the blood and urine test results when I see her on Friday.

Other than my peripheral neuropathy, I am in good health. No rashes, no lung or sinus issues, no fatigue or weight loss. I am happy that my rheumatologist is so concerned (she made me promise to call her if anything changed between visits), from what I've read my prognosis is much better the earlier a diagnosis is made. I just want to make sure it is the right diagnosis before starting any aggressive treatment.

Thanks to all for sharing stories and letting me look around here to educate myself.

[annekat]

Welcome, Tom. You have found the right place if there's a chance you have WG. It does sound unusual to have just the neuropathy with no sinus or lung issues, fatigue, etc. But everyone is different, and each case is a little different. Your rheumatologist must have reasons to think you could have WG, though I hope you don't. Keep us updated on what she finds out and what is decided, and feel free to ask any questions. This forum is full of great, caring people and usually any question will get plenty of response. Also, you may learn a lot by searching the archives.

[Pete]

Welcome aboard, Tom.

I'll echo Anne's sentiment about how you're presenting to your rheumy. The symptoms of this dumb disease are vague and insidious. Hope you get a definitive diagnosis soon so they can treat what's ailing you.

[mishb]

Hi Tom and welcome.

I hope your blood tests come back negative for WG, but if they don't, then you have found to right place, in this forum.

I also agree with the others above, however, I do know of a lady that was diagnosed with WG and she suffers from terrible back pain and I think heart troubles - but no sinus, lung or kidney involvement.......I guess, anything is possible.

Take care of yourself while you await your appointments and treatment

[Alysia]

Hi Tom.
welcome to the forum
I understand that your diagnosis is not clear yet. it seems that if it is wg, then it is not a typical one.
I suggest you to do your own research in addition to your doc's one. there is a group on facebook about vasculitis https://www.facebook.com/groups/332547823431093/
maybe you can get some info there too. if I remeber well some people there were writing about neurological problems. but I am not sure.
anyway, I hope you will find soon what it is and a med to recover completly.
good luck and update us.

[tkd7]

Saw the rheumatologist yesterday, she is still convinced on WG. My PR3 AB came back at 62. I also saw that my nerve conduction study was abnormal showing mononeuritis multiplex. I did do some research online and found this:

Patients with GPA rarely present with neurologic symptoms, but neurologic involvement may occur in 22% to 50% of them during the course of the disease. The most common single manifestation is peripheral neuropathy, but mononeuritis multiplex is the most common clinical pattern.

Still on track with the CT Scan Monday, and now meeting with the neurologist Tuesday to plan for a biopsy.

I did look at the threads on this site about medication and treatment, a lot to learn here, I appreciate having a friendly resource in this site.

[JeanMarie]

Welcome Tom--you found a good place if you do have WG. I hope you don't--but if you do this forum will give you lots of info. Keeping my fingers crossed that you are negative for wg!!!

[mishb]

Saw the rheumatologist yesterday, she is still convinced on WG. My PR3 AB came back at 62. I also saw that my nerve conduction study was abnormal showing mononeuritis multiplex. I did do some research online and found this:


Still on track with the CT Scan Monday, and now meeting with the neurologist Tuesday to plan for a biopsy.

I did look at the threads on this site about medication and treatment, a lot to learn here, I appreciate having a friendly resource in this site.

Tom, I thought the deal was your bloods were going to come back negative for WG

So now it looks like you have received the full package with the mono as well

Good luck for Monday and Tuesdays appointments and I hope some definate answers come from these

[tkd7]

I'm accepting now that I have a rare presentation of this rare illness. I did research yesterday and there are cases of WG presenting with neurological symptoms, although it is not common. A friend told me yesterday that I can't catch a break. Well maybe the break is that I haven't had it impact my lungs or kidneys yet, I suppose I could have ignored my symptoms and unexpectedly things could have gotten much worse really fast.

[pberggren1]

We are all blessed in special ways.