Hanging from the treetop

[onatreetop]

Hey All! Sorry its been a while. Things are movin along as always. Doctors and labs and testing over and over. Labs have been good but things have been happening that are different. The 3 second lose of vision , more forearm pain and weakness. Rib muscle tightness. chest pain. I go for the nuc stress test on wednesday. Had 3 mri's and 2 mra's. angio of the heart and more blood work. so far everything is coming back clear. I amstarting to wonder if these are the beginning side effects of the meds that I have been taking since last June? The docs all say could be ......but we can't find anything wrong. Still working and sweating. Have to to pay the copays for all the visits! Thwe mra of the back said not just L4- L5 . Now I have t5 t6 and t7 to deal with. Havent had a period since january either. No one seems concerned about this but me. i am just 42! Not that I miss it terribly or anything like that but it isnt normal. Asked my prim and rhum about it neither are concerned. I call the gyn next. When I have a free day without another appt. Otherwise life just keeps on rolling. Over me ? maybe. But I still have my head up and keep moving this poor excuse of a body. Want to get on the eliptical so bad but the foot is still not good. I am going to have to work my way back up to it again. Trying to garden when weather allows. Want to go campimg soooooooooooooooooo bad but need to wait for the pollen to stop with the clouds of pine and oak dust. 3weeks only I hope. That's about all I can remember about now. Everything keeps moving so fast.

[Sangye]

What does your Wegs specialist say about all this?

[onatreetop]

noda word.Just more testing and wait. But everything so far looks fine. They offered me injections for my back but it isnt that bad yet. The arm thing is getting in the way a lot. makes it had to work. i just keep going to the appts and hope that one of them finds something to fix?

[elephant]

Onatreetop, I have rib tightness and forearm pain. Actually the forearm is a little swollen, spoke with three doctors about it and they told me, " You do not have a blood clot in that arm." Three months ago I had my whole leg ultrasound to rule out a blood clot. My left lower calf is slightly swollen. Anyways I had two chest x rays in the last 6 weeks, nothing. I see the lung doctor Tuesday and I will be asking for a CT of my lungs. I really don't know what this all means.....damage from the WG? side effects from the medicine?....
Onatreetop, let me know what they find out! I am very curious!

[Sangye]

Onatreetop, please don't let them do injections into your spine. Find a chiropractor who can assess you properly. Degenerative changes on spine MRIs and CTs are common and don't necessarily mean you need to take drastic measures like injections. (MDs act like that's conservative treatment, but it's not) Degenerative changes mean abnormal wear and tear in that area. I can also tell you that MRI reports will list every abnormality. Many people panic when they see the long list of what's "wrong" with their spine, but by their 30's most people will show degenerative changes in their spine to some degree--with or without symptoms. A study showed that 25% of people without any symptoms had bulging discs on MRI.

Spinal misalignments in the thoracic (rib) area can cause rib tightness and chest pain. I already know you have misalignments there because your film showed degenerative changes at T5-7. Misalignments in the neck can cause forearm pain and/or weakness. A common posture seen with these patterns is slouching-- chest caved in, shoulders forward, deep bend in the neck.

[Lola]

Wow, that's good advice and good information, Sangye! Thank you. Some of the same problems I'm having, along with the thoracic pain. I thought it was probably related to my spine. Slowly getting off the prednisone, think I need a good chiropractor. Got a name in your bucket for Olympia, WA?

Thanks, Vicki

[Sangye]

Got a name in your bucket for Olympia, WA?

Thanks, Vicki
Yup-- Seattle Natural Health | Integrative Medicine (http://www.seattlenaturalhealth.com/index.html) They're in Seattle, which means a drive for you. I don't know how you feel about that. I'm the kind of person who will drive any distance to get to an excellent doctor-- holistic or medical.

I don't know either of them, but they're trained in the same technique as me (Applied Kinesiology). I like their website and their experience. The fact that Dr Ramaley is also a naturopathic physician brings you the best of all worlds. If you like, I'd be happy to communicate with them via email with some general guidance/issues in treating a Weggie.

[elephant]

Sangye, I have osteopenia in my back. Can I still have a chiropractor work on me? I think I need some adjustments.

[Sangye]

Yes-- we're trained in how to adjust people with osteopenia or osteoporosis safely. I'm sure you'll feel better-- think of how much your body has been through all these years.

[Lola]

They're
I don't know either of them, but they're trained in the same technique as me (Applied Kinesiology).

Gosh, I have to think about that all. The drive isn't just the miles - it takes me 1 - 1/2 hrs to drive home from Tacoma, which is 35 miles, and this is on the N. side of Seattle. What is Applied Kinesiology?

[Sangye]

AK is unique--finds and corrects imbalances that no other technique can. When I lived in AZ I drove 3 hours (one-way) to the nearest AK chiropractor, for about 10 years. After I closed my practice, many of my patients took my advice and drove to him, too. None had any regrets. (Many of them were driving with infants, so it was a really big deal to drive 3 hrs across the desert.) I was the only AK-certified chiropractor in northern Arizona for 8 years and had patients who traveled many hours from 4 Corner states just for AK.

I believe that doctors practicing AK are the best to handle the complexity of Wegs, the drugs we take and the side-effects we deal with.

Here's some info about what AK is:
International College of Applied Kinesiology (http://www.icak.com/about/whatis.shtml)
This page gives great info: International College of Applied Kinesiology (http://www.icak.com/about/icak_faq.shtml)

[Col 23]

Taking it all in Sangye. Interesting so many of us have back pain and probs in that area.
Col 23

[Sangye]

Dysfunction of the viscera can cause a spinal misalignment in a segment that shares nerve supply. The nerves to the liver are at the 5th thoracic level (T5). Whether or not our liver blood work is abnormal, all of us taking these drugs have unhappy livers. Chemo and pred are particularly damaging. So it's natural that most of us would have dysfunction in the mid-thoracic part of the spine. Misalignments aren't always symptomatic, but they always cause problems.

[Lightwarrior]

Know of any docs in Yuma area??

[elephant]

Sangye, do you know any doctors around Greenville,SC area?

[Sangye]

Lightwarrior-- I don't know of any in Yuma. Call my AZ chiro (Dr Mark Force) and ask if he knows of someone near you. 480-563-4256

Tell him Christie the Buddhist nun chiropractor with Wegener's sent you. LOL--he'll know exactly who you're talking about!

[Sangye]

Elephant, there's one guy listed in Greenville, but it doesn't show a website and I don't know him. I'm seeing my chiro tomorrow and can ask him if he recognizes the name.

Dr Richard Parnell, D.C.
864-241-0407

[elephant]

Thanks Sangye for checking this out for me. How is the exercise pedal doing?

[Sangye]

My pleasure. :)

It's going well. It does alleviate some of the lower extremity swelling and surprisingly is building some muscle. Even though I'm really wiped out, I still try to do some every day. I'm just spinning at low speed with no resistance--just to keep fluid moving.

[Lola]

Thank you so much for the info, Sangye. I am digesting it all, trying to sort out my priorities.

[onatreetop]

They tested and tested and nothing new. Did five more tests and came back good or unchanged. The forearm pain is mucsle and or tendon pain. The rib pain they are trying to say is the spin. I am starting to show some side effects from the meds. Saw the urlo. and they put me on Methylphen. The script was for something else called and checked for generic and the doc said no but the phar said yes. Tried to look it up and there is no monograph available. I know it is going to line the bladder to protect it and relax the neck so it doesnt hurt to pee anymore. 4 x a day for this new med. anyone heard of it? It original script was elmiron.

[elephant]

Sounds like prednisone side effect. The Rheumy at JHU think you have WG or not sure?

[onatreetop]

he said no and yes. So the treatment continues.Because yes. After the rhum lowered the pred to 15mgs I started having probs again so up it went. oh well.

[Sangye]

Onatreetop, I'm confused. Have you seen the JHU doc again?

[onatreetop]

Havent gone back yet they said if I wanted to they would see me after a postive biopsy. So.....................................no I am still being treated locally.

[elephant]

Onatreetop forget the positive biopsy, they did not go on a positive biopsy with me. I was diagnosed July 2008 and they increased one of my immunospressants and started the Prednisone 60mg and then I got worse after 7 months and I had a lung nodule grow and they opened me up to see if it was cancer or wegeners. It was confirmed WG. It was the most painful surgery I ever had and would not want anyone to go through that!
I would call JHU see if they would see you. You need to be watched carefully.
Geez, I'm sorry to nag.
Yes, need to call the doctor about the eye.

[Sangye]

I agree with Elephant about going back to JHU. Maybe you misunderstood about needing a (+) biopsy? They treat plenty of Weggies who never had a (+) biopsy. It seems to be a red flag whenever a rheumy just increases pred instead of changing the dose or type of immunosuppressant. JHU will know what to do. Please call!

[pberggren1]

Please call JHU Onatreetop. I totally agree with elephant and Sangye. They are the top nags you know. I am going gor my masters in nagging. Boy oh boy!! What a course load!!

[Sangye]

LOL-- the internship is the roughest. You gotta have A LOT of nag hours to pass... :D

[pberggren1]

That's where they said I have to catch up in. I don't have a lot of experience in the field.

[pberggren1]

Sangye, do you realize you are nearing 3,000 posts and I am nearing 500!

[Sangye]

LOL-- You must practice, Grasshopper. :D

[pberggren1]

From a learned one as Yourself, Master.

In pool there was a small group of us that went by Start Wars names. I was Master Obiwan Kenobi.

[onatreetop]

I am seeing the rhumy in the morning. My hands and arms have gotten worse. The pain is making it into and pasted the elbow. Hurts to rest my arms on anything. Feet are kilimg me. must be time new shoes again. I have been thinking about going back to JHU but...........the time and trip right now I dont think I can handle. Having problems with my 14 year old and 7 year old at there schools. My stress level is at a new record high with them , my moms adventures, and work. Feeling like a single parent doesnt help much either. Things are really not great and I am taking one day at a time. hoping they get better. My mind is melting or I my have left it at work somewhere. Maybe I will find it when I return to the house I left it at? I asked my prim. doc for panic attackmeds. holy cow!! they knock you down and out. Took one once and not since. Theh chest pains are better than they were. So I havent had to use them again yet. We had a yard sale last weekend. That was fun. My mom was in the hospital again with an infected wound. 2 days this time thank god. Thats just the bigger things that have been weighing me down. There that was a load dumped wasnt it. Vision and headaches. yeap, I am jumping hurtles everyday that dont seem to end. wearing me down. But theres a new day in the morning!!

[elephant]

Onatreetop, oh...I totally understand what your going through....I have felt like this for the past year and a half....always something.. So glad you are going to the Rhuemy tomorrow. Hope you return to JHU soon.
Hope things get straighten out with your kids. Then worrying about your mom, sounds like with all the stress your WG is pounding on you.
Keep you chin up. What medicines are you on besides prednisone?

[jola57]

onatreetop, I am sorry you are having such a rough go of it. Stress realy makes this disease flare up, so you must relax. Things might crash around you but if you do not have your health they will crash anyway. You and your health must take 1st place, then your kids, your mom. As hard as it is, you are the most important person so take it easy. If you are taken away to a hospital everything will have to run without you anyway. Take care.

[Sangye]

That is excellent advice, Jolanta. I hope things calm down for you, Onatreetop. If you can see therapist, it's a great way to learn how to handle all that stuff without getting sicker. And no bad side-effects like the meds!

[onatreetop]

I had to have a someone come in to start talking to the kids about a month ago. I get to talk to her too. The meds and vits are up to twenty different some up to 4 times a day. Valuim still taken with the predisone which is up to 40mg as of yesturday. cytx still at 100mgs.
Heres the rest...........

metoprolol 25mg, hydrochlorothiazide 12.5mgs, Lisinonpril 10mgs, crestor 5mgs, daily vit. asprin 81mgs,triple omega 3-6-9, caltrate600d 2x , bractrim 3 xs a week, allergra 180mgs, amitriptyline 50 mgs, cymbaltla 120mg, vit C 1000mgs. perocet half or whole every 4-6 hours as needed for pain, Methylphen 4 xs a day.

That covers it I think.

[Sangye]

Onatreetop, those are some serious drugs you're on. Do you have a psychiatrist to oversee your meds? That list looks like it can throw your brain chemistry up and down like a rollercoaster. There is no way a regular PCP can handle that combo.

[elephant]

Onatreetop do you have allergies? I noticed you are taking Allegra, I took that before I was diagnosed thinking it was allergies.

[onatreetop]

Its a comb of all the 4 spec docs. I am the one who brings them each the updated meds list and keeps them up to date. That I a get all new meds from the same pharm. so they can warn me if there is a problem too. Saw the rhumy and my levels are rising so now the pred goes to 40mg for a week then I go back. did more labs and get another chest catscan in the morning. he got me with injections in my right hand and left elbow for the first time. Felt good yesturday but really sore today. So it looks active again or begining so................here we go. Got to start my day. check back this pm. Have a great day all!!!

[Sangye]

I'm not worried about drug interactions-- your pharmacy can pick up on that. I'm worried about the combo of drugs affecting your brain chemistry. Combining drugs like valium, cymbalta, amitriptyline. percocet and methylphen--that's pretty powerful and really requires a specialist in those meds to oversee it. Psychiatrists are the only docs who specialize in that. Throw pred and a chronic illness into the loop and you've got a recipe for trouble.

[elephant]

Onatreetop sorry to hear your labs are off and Wegeners is brewing still. I was wondering how long have you been on Cytoxan? Was wondering if the RTX that Sangye took would smolder your WG?
Yes, dido what Sangye said. I know this is overwhelming after hearing bad news and then to have your prednisone upped. Hey, just looking out for you. You have a good day and thanks for sharing. :)

[onatreetop]

i got the catscan results before the doc. the lungs are clear!!!! Yeah! I called to see if we can lower the dose again and get last weeks lab results but it was to late. Have to wait through the weekend. I started on 50 mg of cyt. for the first 5 monthes ? 6 maybe? then labs came back high and went to 100mg cyt. last december and have been there since. End of June will be a year now. Pain in my hands and arms came back with swelling thats what triggered the up on the pred this time with the higher pr3 labs.

[elephant]

Onatreetop, the great thing is that your lungs are clear! Yahoo on that, hoping for a speady recovery for you.

[DEE]

good news about clear lungs onatreetop thats what im working towards next !!! DEEx

[Sangye]

Onatreetop, what great news about your lungs!! Hooray! :D

[jola57]

Onatreetop, clear lungs are the best news, just hang in there. Like Sangye said, psychiatrist would be the best doc to evaluate and keep tabs on your above mentioned medications. they do get into your brain and can mess it up quite suddenly if not kept in control. If you can , please see one ASAP.

[onatreetop]

Thank you!I am feeling better just knowing there clear too. The meds I have to work on. The new one kept coming up riddelin but it isnt. (bad spelling). It is a brand new geniric for elmbrliel?? or something for the bladder. not the ADD med. Anyway hope to here from the doc on monday will see him on tuesday for my labs. Trying to get lots done while I am speedy gonzolus this weekend. We are getting a taste of summer and i think I may shed a few pounds quickly with this heat.

[jola57]

Have fun in the sun

[onatreetop]

trying to avoid the sun. the humidity is kicking my butt. The tree pollen count is outragous right now. You can see it like a cloud in the area or more of a fog. light green fog!! Bad, really bad. Decided to move furniture around in the house instead of venturing outside. i kinda like be able to breathe freely. calling the doc after 9am to see if the results are in from the lab work. i am going to try and do two houses today and get home in time to make dinner before ccd. Thanks again for all the support. Wish I had more time to get on here. It does help so much to clear the mind a bit.

[elephant]

Wishing you good news. Have a great day Onatreetop!

[onatreetop]

No response from the test results. Have to wait another day I guess. Still hot as heck here. Had a house with no air today. thought I was going to pass out from heat. Just kept drinking water and made it through. hopefully results Tuesday.

[onatreetop]

Got the labs back the pr3 went down!!! Yeah!! So did the pred . to 30mgs anyway. I will be parked there for 3 weeks. He poked me again in the right rist.Ouch! Trying to get rid of a cyst. I am right handed too. Not for therest of this week thought. So labs are ok not great and pred went down a notch. Now to get use to these glasses. Had to reorder the sunglasses they came in with pink lenses? I asked for brown or amber. Oh the joys of aging with meds too.

[jola57]

onatreetop, oh come on you didn't want to look at the world with rose tinted glasses LOL Glad that your lab results look so much better. Now just relax and let the meds do their work.

[elephant]

Onatreetop good for you getting new glasses. Glad your lab results are not worse! Have a nice and relaxing weekend. :)

[Sangye]

Sounds like things are moving in a good direction! Now don't overdo... (I had to get a nag in) :)

[onatreetop]

Thanks and I will try.No promises though. It is going to be a busy weekend. sleeping better the last few nights. Soloway increased the elival to 100mgs. Now I am really out like a light when I hit the pillow. The sleepstudy showed no rem til 15 minutes before I woke up even with the machine. No snoring with it but no better sleep really. i hope to pick up the sunglasses today. Hope you are all well and comfortable.

[elephant]

So good to hear from you ONatreetop. Sleep tight and relax and enjoy this weekend!

[onatreetop]

Hey low! Saw the Cardio doc today and got a decent report. Dont have to go back for 3 monthes now. Saw the Urolg. doc too. More meds from him. Still have burning and frequent urge to pee but nothing. See him in 4 monthes. I see Soloway next week again. And the pulm doc the same day. My hands have been acting up again. swelling and pain. i have been doing a lot but am very careful about how much I use one hand then the other equally. been going to bed earlier so that I can get up earlier and it makes for a better morning. Feeling ok in general. Tired at the end of the day. But ok otherwise. kids are driving me crazy as usual. I swear they talk just to hear themselves speek. Ahhhhhhhhhhhhh! Time for more meds.

[elephant]

Onatreetop, sounds like your busy. Do you have a urinary tract infection? That is weird that you have burning? Are you still on prednisone?

[onatreetop]

never got off. Thats what i was thinking too. but the urlog. says no. He has given me 2 meds one that lines the bladder to protect it and another that is for cronic bladder pain and burning. Yes I have been busy thank god. No income ,no co pay money, meds, food , etc. I have to take it while I can get it. I called today to get the labs and let the doc know that my arms and hands are getting worse again. He said the labs havent changed and that he wants ultasounds done on my arms and another catscan of the spine. Flow seems ok. There has only been a few moments that I thought clot?? But then feeling came back no more throbing. Just a short moment of coldness and throbing. nothing lasting. i have noticed more muscule spasims lately. They are freaky. the cramping is the worst. feet , hands , back and ab muscles. that is stranger still. I am tired but very awear of what is happening. I was told that the sleepstudty results are saying cpap machine would be beneifical. So I get to dealwith that. I told them that if the insurance covers it I will take it if not I will have to wait. Thats all for now.

[elephant]

Onatreetop good to hear from you. Your potassium might be low. Are you eating banana's? Oranges? Dried fruit? They help increase potassium. I am so glad your doctor ordered a ultrasound of your arms, you could have a blood clot in your arms. I discussed this with my doctor at one point, because my left arm was feeling tight. Sorry for your financial troubles, especially when you are sick still and trying to support a family. My heart goes out to you.

[Col 23]

Hello Onatreetop
Just read this thread, sounds like you've been having a rough time. Just a note to let you know
Im thinking of you and wish I could add something that could help. One min, one hour, 1 day at a time.
Col 23

[Sangye]

Onatreetop, it doesn't sound like they're figuring out the source of your bladder pain. Covering it up with meds is a bad idea. Did they scope it to see what's going on? I forgot.

Hang in there-- I hope you'll be feeling much better soon. :)

[onatreetop]

Thanks. no scope. They talked about it but it never happened and I didnt push the issue. I eat a banana eveyday or two. apples are my sweet treat at night when the cravings start. Otherwise grapes, raisins, berries are the norm for me. We have always lived pay check to paycheck so It is nothing new really. Except the fact my other half has no idea what everything cost because I some how manage to pay for all my meds etc..

[jola57]

onatreetop, please insist on bladder scope. It is very important to see if there are any abnormal changes. the good news is that the burning can be from stones, or just UI infection. I know that when I get them there is realy nothing that shows up anywhere but just in my suffering. Do you eat or drink acidy food? When I drink or eat a lot of oranges i tend to have a couple of episodes of burning and pain in pelvic area. But that goes away quickly. The ultrasound of arms is a good idea, but I doubt they will find anything. I think that we get mini flares, when just some organs are affected and then it quiets down again and then another flare shows in another organ. I hope that all goes well for you and you soon feel better. Working when you feel like this is stressful. Make sure(realy sure) that you take some time off for yourself even if it is 1/2 hour a day, but you need it to recharde your batteries. Wegs is just looking for a weakness to jump in on. Take care. sending you a warm big but gentle hug.