Hi! I'm new :)

[ArlaMo]

Morning everyone! I'm Michelle, aka ArlaMo on the internet, and I was recently diagnosed with Wegener's (April 2010) and spent several hours yesterday reading through lots of great information here.

My journey started back in October of last year - got a cold that just wouldn't quit. Before that cold, I was one who never got sick, never went to the doctor my entire life. After a few weeks with no improvement, we tried antibiotics, looked at me having some adult-onset allergies and tried meds for that, tried more antibiotics. Then, I developed the earaches from h-e-double toothpicks (while on the antibiotics) and we got an ENT involved. He's awesome, but was trying to treat the symptoms. Lost my hearing almost completely, ended up with tubes in both ears. Had sinus x-rays, head CT, lung CT (all negative.) Still had the cold, developed a never-ending cough and then Bells-Palsy on the left side of my face. Tried high powered antibiotics, including some injections and we thought we saw some improvement, but then the joint pain started. Could hardly move or walk - got cortisone injections in the major joints which actually helped a lot with the pain.

All along, my sweet husband knew something more was going on but nobody could figure it out. Then, one morning I woke up and had all these weird red lines under my fingernails - splinter hemorrhages. This finally clicked with my husband (he's an ortho) and he remembered these being related to carditis or ??. Talked to a new doctor (internal med) and he immediately knew it was Wegener's after hearing my history. Did the blood work and confirmed it the next day.

We live in a pretty small town, so no rheumatologist anywhere close by - I drive 3 1/2 hours to Arthritis Northwest in Spokane to see a doc up there, right now once a month. Getting labs every two weeks and trying to get into the nephrologist here in town (booked out til August) because I have kidney involvement.

I'm on 200mg cytoxin (upped from 150 because my creatinine spiked) and 60mg pred. Bactrim 3x week, plus the fosomax once a week. I'm about 6 weeks into the treatment. The joint paint is much less, though my left foot is numb on the bottom - actually it feels more like I sat on it for a couple days and is all pins and needles. Most of my hearing has returned, but the audiologist thinks there is some permanent nerve damage and it is definitely not what it used to be. Bells Palsy resolved, the cough has almost gone away, and the nasal congestion is much better, though I get the gross crusties that need to be cleared out almost every morning.

As for me, I'm a SAHM to 6 great kids. My oldest will be a senior next year and my youngest is 3. It has been pretty rough on them. My husband is an ortho - we just finished our 17 year journey through masters, med school, internship, residency, fellowship last year. Thank goodness this didn't start til we were through with all that!

I love music, singing and got a cello for Christmas - unfortunately, the whole ear thing seems to have ruined what used to be close to perfect pitch and I sound like a frog when I try to sing now. My other love is photography, which has also been affected by this darn disease...or at least the meds I'm taking. From reading, it looks like my shaky hands are due to prednisone side effects?? Hard to take good photos now and I really miss it!

Anyway, trying to keep my (double...triple) chin up (oh yeah, got the moon face already) and just looking for more info and support on this journey.

[jola57]

Hi Michelle, sorry to have to welcome you here but glad you found us. This disease is a silent little mouse, it acts when you least expext it. Don't worry about the shakes, they will go away and you will be able to take great pictures. My husband is an anesthesiologist and I am an immunologist (althougth for 20 years I have been a realtor/manager) and neither one of us thought about WG, we thought polymialgia rheumatica for a few months before a sage old neurologist diagnosed WG. Prettey same symptoms here, but went a little further with the feet, one developed a dropped foot and the right is like yours pins and needles. After cytox and pred I regained use of the left foot but now it is permanently painful and twisted. Actually getting an xray and then cat scan in the next few days, then looking for a good ortho. Any takers LOL. We've practiced now for over 20 years in mission and Abbotsford, say congratulations to your hubby and all the best. You will feel like yourself with a new normal very soon.

[ArlaMo]

Thanks for the welcome! My husband is actually from BC - born in Tofino. They lived all over growing up - Kimberly, Cranbrook - his parents are now in Chemainus.

My doc always asks about foot drop - I hope we caught it in time to prevent some of the more severe symptoms.

[elephant]

Welcome Arlamo, you are certainly busy with 6 children. How do you do it being on these meds? Wow! Give it time, some of your symptoms might completely go away. It's a wait and see with this disease and medicines.

[ArlaMo]

It has been a bit crazy, elephant! My youngest (3) has definitely had way more computer/TV time than I normally allow my children, just so I can catch a nap here and there. The older kids have been pretty good to help, but they are so busy. It is hard to keep up sometimes!

[Theresa]

Welcome, Michelle! So sorry you have to join this group. I'm pretty new as well. My son was diagnosed in March. I've found lots of great support here already. Sounds like you have your hands full but that you have lots of family support.

[elephant]

Don't feel bad about the kids watching TV, you need your rest. I had my kids watch TV too. They actually got bored of it and now they play with lego's, barbies....Keep on resting it helps!

[Sangye]

Hi Michelle, glad you found our group early on. Kudos to your doc for diagnosing you so quickly. Everyone else knows I'm going to nag you to find a Wegs specialist to oversee your care as soon as possible. Even if your current rheumy seems to be on top of things, with this disease you need someone who sees hundreds of Weggies. Also, waiting until August for a neph consult is waaaay too long. You can lose kidneys in a weekend with Wegs. I suggest you contact the VF asap to connect with a Wegs specialist. You'll have to travel to a vasculitis center, but it's much better than just having them consult with your doc. You need the one-on-one relationship with them.

Your foot-drop might clear up entirely or partly, but there's no telling with Wegs.

How on earth you're doing this with 6 kids is a mystery to me. Give yourself a pat on the back for that.

[Walter Wolynsky]

Can you explain Foot Drop to me please. I found your bio interesting...as are all others.

Walter

Thanks for the welcome! My husband is actually from BC - born in Tofino. They lived all over growing up - Kimberly, Cranbrook - his parents are now in Chemainus.

My doc always asks about foot drop - I hope we caught it in time to prevent some of the more severe symptoms.

[ArlaMo]

Can you explain Foot Drop to me please. I found your bio interesting...as are all others.

Walter

Foot drop happens when there is weakness or paralysis in the front part of the foot - making it hard to step without dragging the toes. If you have it, you would need to life your foot up high to step without drag. I actually don't have it - but the doc asks me about it every time I talk to him, probably because of the numbness on the bottom of my foot.

Orthotics worn in the shoe can help, I think along with a light brace. I'm trying to remember exactly what my husband said. My doc said wrist drop can also be a problem - I'm assuming a very similar physical manifestation where lifting the wrist is difficult/impossible due to weakness in the muscles or nerve issues in the wrist.