Hello from Alaska

[Alaskangirl]

I was diagnosed with Wegener's over 2 years ago. I feel like I have been to hell and back with this. I am sure most of you can relate. I had 9 months of IV chemo which made me so sick (rutaxin and Cytoxan) that I had to have a back fusion because I blew two discs in my back from the nausea. I am recovering from back surgery that was last October. I had to have an emergency surgery 5 weeks later because the incision wouldn't heal.. and got infected. I am trying to maintain my job, and etc. I am having some new symptoms and I want to know if anyone else has had any of these. The Wegener's is in my head and seems to be attacking my eyes mostly. The pain is unreal at times. I am losing the feeling on the right side of my face off an on. (this happened when I was first diagnosed) And Saturday my left leg started doing some crazy stuff. It felt like my leg was being shocked by electricity. The pain was almost more than I could bear. I finally took enough pain killers to knock myself out. I called my doctor, and he cant see me until March 19th. We don't have many doctors to choose from here. He is only one of two RA docs in town. Today the same symptoms came back in my leg. About 30 minutes ago, I stood up and my left leg gave out on me and I fell flat. I haven't done that since the back problems. I am scared and I don't really know what to do. Can someone recommend someone or something to help me? I am single, and have no family here. So any suggestions would be helpful. Also, about 3 weeks ago, I woke up and my left eye was completely blood shot with horrific pain. I ended up in the ER because the pain was way beyond my management. I called my ophthalmologist, and he said he read my ER notes and he didn't think it was much to worry about. I have never had that happen to me before. I am on azathioprine, steroids, humera for RA.

Thank you for taking the time to read this, and for any replies. God Bless. If I didn't have my faith, I don't know what I would do.

The Alaskan Girl

[drz]

The leg issues might be neuropathy which can happen with Wegs.There are some meds that can help with pain but the weakness might some thing that requires a neurologist or physiatrist to evaluate if you can see one. The physiatrist might be best one to treat the pain too. I would want a second opinion about the eye since many here have lost vision rather quickly from Weg attacks. Steroids and other anti-inflammatory meds can often save ones vision if treated quickly. Mine was treated by an optometrist successfully even before Wegs was diagnosed and they might be easier to see quickly.

[drz]

I was diagnosed with Wegener's over 2 years ago. I feel like I have been to hell and back with this. I am sure most of you can relate. I had 9 months of IV chemo which made me so sick (rutaxin and Cytoxan) that I had to have a back fusion because I blew two discs in my back from the nausea. I am recovering from back surgery that was last October. I had to have an emergency surgery 5 weeks later because the incision wouldn't heal.. and got infected. I am trying to maintain my job, and etc. I am having some new symptoms and I want to know if anyone else has had any of these. The Wegener's is in my head and seems to be attacking my eyes mostly. The pain is unreal at times. I am losing the feeling on the right side of my face off an on. (this happened when I was first diagnosed) And Saturday my left leg started doing some crazy stuff. It felt like my leg was being shocked by electricity. The pain was almost more than I could bear. I finally took enough pain killers to knock myself out. I called my doctor, and he cant see me until March 19th. We don't have many doctors to choose from here. He is only one of two RA docs in town. Today the same symptoms came back in my leg. About 30 minutes ago, I stood up and my left leg gave out on me and I fell flat. I haven't done that since the back problems. I am scared and I don't really know what to do. Can someone recommend someone or something to help me? I am single, and have no family here. So any suggestions would be helpful. Also, about 3 weeks ago, I woke up and my left eye was completely blood shot with horrific pain. I ended up in the ER because the pain was way beyond my management. I called my ophthalmologist, and he said he read my ER notes and he didn't think it was much to worry about. I have never had that happen to me before. I am on azathioprine, steroids, humera for RA.

Thank you for taking the time to read this, and for any replies. God Bless. If I didn't have my faith, I don't know what I would do.

The Alaskan Girl

Web site difficulty today resulted in a double post but content is the same.

The leg issues might be due to neuropathy which can happen with Wegs. A neurologist or physiatrist if you have access to either might be best ones to evaluate this since neuropathy results from damage to the nerves. The physiatrist could also help with pain management.

I would want a second opinion on the eye stuff since many here have lost vision from Wegs attacks. I saw an optometrist to treat my eye symptoms from Wegs and it was successful and they might be easier to get into to see too.

[Alaskangirl]

Thank you for your suggestions. I will look into finding someone tomorrow. I went to Casey Eye Institute in Portland and the Swedish Hospital in Seattle when I was first diagnosed, but thought I was in good hands here, but I am now experiencing symptoms that I haven't had, and feel my docs aren't taking me seriously. This is my life, and I have to be my own advocate. I just don't have much to choose from here.
I don't have the means to get out of state right now. I have exhausted most of that while under going the surgery and the 2 months of being completely off of work. Again, thank you.

Alaskan girl

[Alias]

Greetings fellow Alaskan. Sorry you are having such a rough time. I definitely relate to the difficulty you've had in getting adequate treatment here. I get my labs done locally and travel to Seattle every few months to see my rheumatologist. It's costly but I have not yet found a good alternative. I would like to transition to someone local, since I am pretty stable at this point, but as you say, the choices are very limited.

I am no expert but I have to say that the leg symptoms you describe could be related more directly to your back surgery than to your WG. Maybe instead of waiting for a month to see your RA guy you could consider seeing your surgeon or another orthopedist or neurosurgeon to get a read on what is happening? I know that can be difficult too, in that getting appointments can be a long process here.

Both of the major orthopedic clinics in Anchorage have walk in clinics. You would start with a PA, but at least you might get on the road to some diagnostic testing to rule out a recurrence of your disc issues, and you would not need to wait for an appointment. Then you would have that out of the way by the time you see your RA doc.

[Alias]

By the way I second Drz's suggestion of a physiatrist as an alternative to an ortho or neuro. There is one major clinic in Anchorage that has many docs and PA's and their own diagnostic facilities.

[Alaskangirl]

Thank you, I am calling the neuro doc in the morning. I am in PT for my back surgery, and he said the same thing. Glad to hear from another Alaskan. Stay well.

[mishb]

Hi Alaskangirl and welcome to the forum.

I'm glad you have found us.

I wonder how many more in Alaska have WG :unsure:

[Alaskangirl]

Hi Alaskangirl and welcome to the forum.

I'm glad you have found us.

I wonder how many more in Alaska have WG :unsure:

I have been told there are about 5 or 6 in Alaska that have WG. I was in contact with one person here in Anchorage, but when I started having the leg pain and then finally having back surgery I lost contact with him. Other than the person who is on this site, I haven't been able to speak to anyone else. I called my docs yesterday, and between 3 doctors you would think I could have been able to get in to see one of them, but the earliest I can get in is March 19th. Really? Very frustrating. I was told that any rheumatologists that come to town to practice end up being booked for several years. We only have two here that I know of. I am considering going to the Mayo clinic in Arizona. But they have about a 4 month wait list also.

Have an awesome day
Anita in Alaska where we don't have hardly any snow. (Boston has it all) the joke today is that we need to move the Iditarod to Boston. :biggrin1:

[mishb]

Wow, that's crazy about the rheumatologists. How far away is Arizona from Alaska? From one extreme temperature to another

Speaking of the Iditarod, our very own weggie friend Cindy is currently competing.

I have seen pictures that she has put up on facebook. The current ones are of her drop bags and not having enough snow :crying:

[Alias]

Anita, when I was at my lowest point and very acutely ill about a year ago, I could not even get a local rheumatologist to review my records, let alone see me, despite pleas from my ENT. You would think they would see it as an opportunity, since we are such "special" cases. I don't know anything about who is in AZ, but I'm pretty sure you can find an experienced rheumatologist in Seattle through the Virginia Mason Clinic, Polyclinic, or University of Washington. btw my insurer covered my travel for initial rheum eval, as a I had a letter from my internist stating that out of state evaluations were necessary. Since then I've had to change health plans and the travel is all on me.

Considering our state's population of less than 1m, five or six patients sounds about right.

[annekat]

Thank you, I am calling the neuro doc in the morning. I am in PT for my back surgery, and he said the same thing. Glad to hear from another Alaskan. Stay well. Hey, you two are both in Anchorage. You should meet up some time. Meeting another Weggie is a good experience in many ways..... the forum already makes us feel less alone with this crappy disease, but meeting each other really brings it home. I've met three Weggies myself, that I know of.

Alaskangirl, I hope you get some answers and some solutions soon. I, too, am single, and can relate to the difficulties of that, and the limitations of funds to travel. I live only an hour or so from Seattle and still have trouble thinking about going there for treatment. I would have to if I was having the problems you are. BTW, we have heard great things on here about the Casey Eye Institute in Portland. I wonder if your docs up there could consult with any of your mainland docs about your case.

[Alaskangirl]

Thanks Tom, Are you in the Anchorage area? So the tingling electric shock feeling I am getting in my leg and face is continuing and I fell a couple of days ago. I called my surgeon, my R/A doc, and they just don't seem interested. I guess if I had a lot of money and was someone important they would pay attention to me. I hate this feeling of not knowing what is happening to my body. Which I am sure everyone on this site has experienced. I tried to talk to someone about going on disability, but they said I am not eligible because I am working. I am working because I need the insurance and a roof over my head. Some days it is such a struggle just to get out of bed. Ok, I am done complaining for now. LOL! Thanks, for your ear. Have a great weekend.

Alaskangirl/Anita

[drz]

I have been told there are about 5 or 6 in Alaska that have WG. I was in contact with one person here in Anchorage, but when I started having the leg pain and then finally having back surgery I lost contact with him. Other than the person who is on this site, I haven't been able to speak to anyone else. I called my docs yesterday, and between 3 doctors you would think I could have been able to get in to see one of them, but the earliest I can get in is March 19th. Really? Very frustrating. I was told that any rheumatologists that come to town to practice end up being booked for several years. We only have two here that I know of. I am considering going to the Mayo clinic in Arizona. But they have about a 4 month wait list also.

Have an awesome day
Anita in Alaska where we don't have hardly any snow. (Boston has it all) the joke today is that we need to move the Iditarod to Boston. :biggrin1:

Have you checked out Mayo in Rochester, MN? They may have a larger staff and shorter wait time to get in?

[Jaha]

Anita,
I am wishing you all the best in finding the right doctors to evaluate your condition. I'm glad that you found this site, there is so much knowledge here. I would think that your back surgeon would have answers to the pain and weakness in your legs. I hope you find the answers soon. You should maybe investigate more on trying to get disability, I know that you can work some. Take care of yourself and let us know what's going on with you.

[Edmonton Rob]

Hello. I read that you are currently taking azathioprine.... I tried switching from cyclophosphamide to that drug and the first time ended up in the hospital with first stage renal failure and also stroke like symptoms, the second time i was reduced to using a walker combined with nausea and severe pain. needless to say I stopped taking that drug. As far as the neuropathy, I can relate to a degree. I developed tremendous foot pain to the point of not being able to stand or walk for more that 10-15 minutes at a time. No amount of morphine seemed to help (unless it knocked me out). My GP prescribed Gabapentin for this and it has done wonders. I currently have little to no foot pain at all. I wonder if this might work for your leg pain? It might be a stretch but could be worth asking your doctor about??

[Alias]

Hi Anita, yes I am in Anchorage. Sorry you are in such a tough spot.

Initially I mentioned contacting your surgeon because I thought maybe your leg symptoms could be signaling some kind of recurrent or new disc issue. I think sometimes surgeons are not that interested in post op follow up, unless they think there is something specific they can fix. They are technicians, and once they've done their thing they may not feel they have anything to offer. Plus we have the added challenge of being in a small medical community with little competition in the market and very busy doctors. Sometimes just getting past the front desk is a major challenge. It's not a good place to be a patient sometimes!

Somebody else mentioned seeing a physiatrist, i.e. a physical medicine and rehab specialist. Sometimes when people have a constellation of mysterious symptoms a physiatrist can put it all together, and they can do diagnostic testing and make appropriate referrals. It sounds like you have a lot going on, so maybe they can sort out what kind of specialists you should be aiming to see. There is a major physiatry clinic here that you may be able to get into pretty quickly. Dealing with a big clinic like that can be daunting, and it sort of "luck of the draw" as to who you will be dealing with and how helpful they are. But if you don't have a rheumatologist who is responsive to your concerns you might consider that. Another thought is to see a primary health care physician, like a family practice doc, to get a referral or order some testing, or at least have someone listen to you and give you some direction.