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 :smile1:
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 :sad:

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

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.

[Alysia]

We are all blessed in special ways.

I feel blessed to have so many amazing friends here :love:

[tkd7]

My rheumy called today - chest CT scan normal. She referred me to a Dr. Robert Spiera at HSS in NYC. He's a WG specialist. Since my case is so puzzling she thought a second opinion made sense. It is a big peace of mind for me to get this second opinion. I know my PR3 result keeps coming back high likelihood of WG, but I don't want an aggressive treatment to chase a result of a blood test.

[pberggren1]

Keep Bob as your main doc. He is one of the top Wegs Experts in the US. He is very very good.

[tkd7]

Keep Bob as your main doc. He is one of the top Wegs Experts in the US. He is very very good.

Phil, your note makes my day. I will sleep much better tonight knowing I'm seeing a big gun in WG to figure my case out.

[tkd7]

The only new symptom I seem to have is night sweats. Everything else is seemingly normal but I've been having night sweats the last few nights that awaken me and I have to get out of bed for 5 to 15 minutes before I can get back under the covers and try to fall asleep. The kind of night sweats where I can feel the dampness on my sheets.

[Pete]

I had night sweats at disease onset and again about a year later when I had a major flare. I'd wake up soaking wet two or three times at night and have to change clothes and bedding. This symptom went away once the meds kicked in. This too shall pass.

[annekat]

The only new symptom I seem to have is night sweats. Everything else is seemingly normal but I've been having night sweats the last few nights that awaken me and I have to get out of bed for 5 to 15 minutes before I can get back under the covers and try to fall asleep. The kind of night sweats where I can feel the dampness on my sheets. For me, night sweats are an indication that I'm flaring. (That is, now that I'm past menopause and know it isn't that.) So I would take it seriously even if there aren't other new symptoms. I'm glad to hear you have an excellent doctor, one of the best, and that alone should relieve some of the stress. I admire your original rheumy for suggesting you get a second opinion from a top-notch doc. So many docs these days seem to have trouble admitting that they aren't perfectly capable of handling something rare and there might not be someone better for the job.

[tkd7]

I had my appointment with Dr. Spiera last Wednesday. I have to say it was the best doctor's appointment I've ever had. He spent the better part of an hour with me. He came into the exam room with my records but made a point of telling me that he hadn't reviewed them, that he prefers not to be influenced before meeting with a patient for the first time. He let me tell my story, took copious notes, and I could tell that he took in every detail. Then he excused himself to review my chart in his office, even came in to see if I had some records that my first rheumy hadn't sent over. After that he examined me and then he invited me into his office for his first thoughts. His exam, both questions and physical, were more thorough and pinpointed than my first rheumy.

He told me that cases like mine are his most difficult. Treating healthy patients is much more difficult than sick ones. He told me that 20 years ago I never would have had this diagnosis or been in his office. He thought that if I had a blood test 2 years ago it probably would have been PR3 positive. But now that I have peripheral neuropathy, it is considered a serious symptom. in the case of GPA, peripheral neuropathy can degenerate into motor neuropathy, which is extremely serious and we want to make sure that doesn't happen. When he learned I was a chemical engineer he started discussing the specifics of the blood test methods with me. His recommendation is that I have the biopsy of the sural nerve in my leg. It showed it was impacted in my conduction study, so that makes it a good one to test, as well as the fact that the physical impact is negligible. Biopsy of an upper extremity nerve has much greater complications. If the biopsy shows GPA, then he recommended rituxan therapy. If there are no signs, he suggested we wait 3 to 6 months and then redo the conduction study to see if there is a change in the neuropathy. Then he said he had to think about my case some more and wouldn't complete his diagnosis for a couple of days, he wanted to consider it a bit longer. Then he apologized for being a little late to my appointment and thanked me for being organized. He said that in my case the therapy would probably be all that I need and that he thought it would be unlikely that it would be a recurring issue after treatment.

I really appreciated that he treated me like an intelligent person, checking for my understanding many times during our conversation and really taking me through his thought process much closer than my original rheumy.

I meet my neurosurgeon this week to prepare for the biopsy and then we'll see what is next. My stress level has greatly improved, getting a good night's sleep every day and generally upbeat about whatever comes next. I feel like I have a good medical team in place and if something does drastically change I can get it addressed quickly and correctly.

[pberggren1]

That is AWESOME news Tom!!!!!! So glad you have a good doc now!!!!!

[Alysia]

WOW, Tom, your doc sounds amazing :thumbsup:
(can I be a bit jealous ? :blushing: )
good luck with the biopsy and update us.

[annekat]

I, too, am happy you have such a good doc who can deal with your unusual case so thoroughly and comprehensively. To have that kind of consultation with a doc sounds like a good dream... certainly nothing I have ever experienced. Getting a biopsy from the nervous system sounds quite unusual and I hope it isn't too much of an ordeal. We will all be interested to hear how it goes!

[Alysia]

Tom, this link might interst you
http://www.medscape.com/viewarticle/733606_4

[tkd7]

Tom, this link might interst you
http://www.medscape.com/viewarticle/733606_4

Alysia,
Thank you for the link, I've found precious little on GPA and neuropathy.

I had asked about other chemo than IV, but the doc was clear about rituxan. This article lines up with that. I had asked since my symptoms are so mild, nothing has changed in my way of life in the last year, still cycling, still working the same schedule, I could have easily not followed up on it.

I guess I ran into a great team of doctors - from my neurologist to my two rheumatologists.

[tkd7]

I had the nerve biopsy surgery done last Thursday. So far my post surgery symptoms are minor, no pain, walking fine, driving no problem - just occasional unpredictable electrical nerve shocks in my foot that are painful and surprising - but they seem to be less frequent each day. Since they removed about 2 cm of the sural nerve in my ankle I will have a permanent numb spot there. I've read over time the other nerves in the area will make up some of the sensation, but there will still be a spot with no feeling. It freaked me out the first night after the surgery when I went to bed but couldn't really feel the covers on my foot.

Results of the biopsy should be available in about a week.

[Alysia]

Hi Tom,
I am sorry for the damage to your foot. maybe it can recover in time :confused1:
now we all keep praying for you while waiting to the results.
I hope it will turn out to be something which is easy to treat.
take care and update us.

[annekat]

Interesting, Tom. You are the first person I remember on here having a nerve biopsy. I wish the same as Alysia and am looking forward to hearing more.

[tkd7]

Hi all, the nerve biopsy results came back normal, no signs of vasculitis. It looks like from here my rheumy wants to continue monitoring my bloodwork for the PR3 antibody levels and my urine for any signs of blood, and I will retake the nerve conduction study in a few months. So no chemo now, it is wait to see if any new symptoms develop or my neuropathy gets worse. I am seeing an ENT later this month, I've been having an issue with my ear feeling plugged, but it goes away with antihistamines, so it will be interesting to see what the ENT doc says.

That's the latest - thank you for all the support!

[tkd7]

Saw the ENT yesterday, he put a fibre optic scope up my nose and looked around, no sign of any Wegener's. I'll do some other tests to figure out the ear congestion. Another blood test and urinalysis back as well, everything normal except that one pesky PR-3 AB test on the ANCA panel.

So my New Year's Resolution, is that after a normal nerve biopsy, normal chest X-ray and CT scan, normal nasal passages and sinuses, normal urinalysis - that right now I just have this one wonky blood test and some neuropathy. I don't have Wegener's, and I'm going to live like that until something changes.

Happy New Year and again thanks for all the support.

[mishb]

I like that resolution Tom - "I don't have Wegener's"

Now that would be an awesome 2014.

My hope is that everyone feels the same way :hug3:

[Sydney Paris]

HI Tom,and welcome. I just introduced my self today as well. Since I have no other organ issues, apart from neurological symptoms, I thought I'd let you know. So far, I'm doing very well, and hope you get a handle on your diagnosis and that the treatment works.

[mdjazz01]

Tom in NJ
I too saw Dr Spiera & he recommended Rutax treatment. Just wondering who your other drs. are? I live near Manhatten and need a new rhemey and ENT and any other dr. I might need in the future. HOpe your still doing well.
Mdjazz

[tkd7]

Tom in NJ
I too saw Dr Spiera & he recommended Rutax treatment. Just wondering who your other drs. are? I live near Manhatten and need a new rhemey and ENT and any other dr. I might need in the future. HOpe your still doing well.
Mdjazz
Hi-
Just seeing this, I haven't been to this thread in a while. I'm doing really well.
I live in Morris County in NJ and all my docs are in the Morristown area. I can tell you about my rheumy and ENT if you want some advice.
Hope all is well.

[tkd7]

Well it's March, time for a retest on my nerve conduction studies and bloodwork. I'll see how the conduction study goes.

So far the bloodwork - PR3 still high - 71.5 - sed rate normal - urinalysis normal.

Saw my rheumy last week and she said I'm her healthiest patient.

Here's hoping for the same evaluation for everyone here!

[mishb]

Great news on being a healthy patient, Tom. :hug3::hug3:

Good luck on the nerve studies

[tkd7]

Great news on being a healthy patient, Tom. :hug3::hug3:

Good luck on the nerve studies

Thanks Michelle!!

[Alysia]

good luck Tom. please update us :hug1:

[tkd7]

Happy news to share - my nerve EMG studies came back improved over last fall. My nerve response in my legs was normal and in the arms showed only signs of carpal tunnel in both hands. Even better is that I actually feel better, I can tell that things are different from last year. Lungs sound normal, urinalysis is normal.

I still have elevated PR3 in my ANCA panels, and with every test the number gets larger.

My rheumy suggested another follow-up with Dr. Spiera, but I didn't see the point right now. I got my rheumy again to say that I'm the healthiest patient she has and I made her give me a high five. She is actually baffled when she sees me, but I'm OK with that. :biggrin1: So I'm sticking to my New Year's Resolution - I'm fine except for one blood test that is wonky.

[tkd7]

I've been away from the forum, but more news to share.

I saw Dr. Spiera today. My recent EMG tests were back to normal. Normal function in my legs, slight carpel tunnel syndrome in my hands, probably from office work. My labwork is good; although my PR-3 is 56, so still not close to normal but lower than any of my previous lab results.

Dr. Spiera said it was the best he has ever seen me and he is continuing to recommend the watchful waiting and said that in his mind I don't have this illness right now.

I'm really happy; for the last year and a half I feel like I've been waiting for the time bomb to go off. So far, it is just ticking.

So other than a wonky blood test result things are good. Thanks for listening, it is hard for others outside of this illness to really understand.

[Pete]

That's great news, Tom!!

[BookNut]

Very happy to hear the good news!!