Neutopathy Symptoms anyone? Confused?

[Terri H]

Hello there!

Or is it called neuropathy symptoms???

I was "somewhat" diagnoised with WG/GPA in April of 2015 by a Rheumatologist after feeling horrible for 2 years. The doctor told me and still tells me that an official dx cannot be given if a biopsy of an affected organ is not done. So she states that I do not have "active" disease.

Luckly, I currently have no organs being affected. In the past I have had flare ups of Iritis, ear inflammation, chest tightness and coughing, aches and muscle stiffness and most of all fatigue. A CT was done and ruled out granuloma, tissue in the lungs, Pulmenary testing ruled out asthma. So far Methotrexate and Prednisone have "helped"control most of my symptoms except fatigue.

In the last several months a new symptom has come about and my doctor will not address it. I cannot sleep...or stay asleep. As you know, no sleep just means being extra fatigued during the day. A year ago I couln't sleep because my whole body ached but that is not the problem anymore. Now, my body tremors on the "inside" throughout the night, waking me at least every hour. It is a tremor you can't feel on the outside, only the inside. Also, I experience intense shooting pains in my toes, parts of my feet and sometimes my legs. What the heck?? Last week, my right foot hurt to walk on it. It was almost like the side of my foot had a bruise leading up to my baby toe. My Rheumotologist has no answers or suggestions for me. She says maybe the tremors are a side effect of the Prednisone? I have tried to Google these symtoms in relation to WG/GPA but I don't get very good results with my search.

Please...if you have experienced any of these symptoms or have any suggestions on how to communicate with my doctor what I am going through so she will take me seriously, I would appreciate it.

Warmly and with much appreciation,

Terri

[Birdie]

I experience intense shooting pains in my toes, parts of my feet and sometimes my leg

Last week, my right foot hurt to walk on it. It was almost like the side of my foot had a bruise leading up to my baby toe

My Rheumotologist has no answers or suggestions for me.

She says maybe the tremors are a side effect of the Prednisone?

Please...if you have experienced any of these symptoms or have any suggestions on how to communicate with my doctor what I am going through so she will take me seriously, I would appreciate it.

Terri,

Basically, you don't know what's wrong. I suggest a second opinion backed up with testing as soon as possible. Granuloma in a tissue biopsy combined with positive c-ANCA in a blood test is the most positive confirmation of Wegeners. No granuloma and no c-ANCA does not rule out Wegeners.

Shooting pains like you describe was my first really obvious symptom, and holy cow they hurt. When that started I went down hill very quickly (two months). In hindsight I should have called every rheumatologist in the phone book until I found one who knew Wegeners. I got very lucky with a solid, correct diagnosis right before too much irrevisible organ damage was done. You can read my tale here:

http://www.wegeners-granulomatosis.com/forum/new-member-introductions/4932-wegener-s-sucks-case-someone-didn-t-already-know-3.html

No need to panic but you need to take action. Take charge. Don't accept "maybe" as an answer to anything. Don't assume you have Wegeners, find out, whatever that requires.

I don't want to be an alarmist, it's just that if it's Wegeners it can be treated and time is critical. So keep yer cool and do what needs to be done.

Gary
Wishing somebody had told me all of that...

[Terri H]

Thank you Gary for your support.

The Doctor said she would treat it like Wegeners. This is why I am taking Methotrexate and Prednisone. There is no affected organ tissue that she can perform a biopsy on. I test positive for the c-ANCA but I also test positive for the marker HLA-B27 which can also indicate other infammatory autoimmune diseases like Ankylosing Spondyllitis. This is so frustrating! If I go to another Rheumatolgist this will be my third opionion. Sometimes I feel like it is a big guessing game for these doctors. I am sorry I sound so cynical. The first opinion said Ankylosing Spondylitis and the second opinion said possible WG/GPA and she is treating it as such. I have already accumulated $2,400 in medical bills that I am not able to pay for (lab test, xrays, CT, breathing tests etc. and that does not include the doctor visit co-pays and medications) I just want to cry.

I will read your story and appreciate your advice. I will find a doctor on the Vasculitis Foundation Website and give them a try.

Thanks so much!

Terri

[renidrag]

Boston and Cleveland come to mind. Boston Medical works with Boston University teaching hospital, will accept almost anyone and also have Vasculitis approved doctors. Depending where you are of course.
Dale

[Birdie]

I am sorry I sound so cynical.

I just want to cry.

I don't have the picture available but do you remember the kitten hanging by it's toes with the caption "Hang In There"????

And be encouraged by the number of people here who have done well, starting with far less than your current situation.

So hang in there, it will work out OK.

[Pete]

Sleeplessness is sometimes a symptom of high dosages of prednisone. How much are you taking? I echo the others' advice, get a definitive diagnosis. Also, see (or have your local doc consult with) a Vasculitis specialist. The Vasculitis Foundation's website has a list.

[Debbie C]

Hi Terri,sorry you are having such a hard time with everything,but I have to agree with everyone here that you really need to find a dr. that knows auto-immune diseases. They shouldn't be treating you for one thing and it may be something else. The dr. you have now really doesn't sound like he has a clue...move on. Are you getting monthy blood and urine checks ? Also like Pete said the pred will effect you,especially on high doses. The VF should be able to get you on the right track.There are a lot of people here that also suffer from neuropathy so hopefully they will get on and maybe have some answers for you.Good luck and keep us posted.

[woz]

Hi Terri, I have had wegs for over 2 and a half years, and have been on maintenance dose of AZA for the last 2 years, have been off pred for almost 2 years. The last few months I have had muscle and joint aches come back, and fatigue, so I'm back on 5mg pred, my blood work is still good, but my Pr3 levels have come up to around 10, previously was under 4 which is normal. I can now sleep, thanks to the small dose of pred, both my big toes get sharp pains, randomly, and my left little toe and the one next to it have been a little numb for the last 2 years, sometimes very hard to walk on, due to the pain, but as I walk around, it eases, It comes and goes. Anything specific you need to know just ask, Its hard at the start, it takes a little time to get your meds, and life to where you want it to be, but it will happen. Officially they biopsied my nose and lungs, could not get a positive result, but they have been treating me as if I have wegs, most auto immune diseases will be treated with the same group of drugs.

Regards Woz......