me

[Jena]

mamma of five that's funny to keep writing that there is a book you should get. it's called Reversing MS. it's by Celeste Pepe and Lisa Hammond. i think it could truly help you. it should be in library. there are a ton of alternate herbals in there that i never even though of. go get it and let me know what you think. gotta run difficult child's to docs now

 

[DammitJanet]

Im lucky (I guess) that I have doctors and am on rx medications...not that they do a world of good. I couldnt function without my medications, that I know. I do use hot baths with epsom salts and hydrogen peroxide in it. There is a rub on or roll on gel that isnt the normal bengays or icy hots. I cant remember the name right now. Susiestar knows it. This is one of those moments when names escape me. Chiropractors use it alot. You can also get a version of it in Walmart. I think it begins with a B...lol. I will think of it! Bio...something.

 

[Jena]

i was thinking what about sclerderma? that could cause joint swelling. just thought of it this morning.

 

[BusynMember]

As big of a pain in the neck this is, I would keep looking at getting to the root of the problem. I think Fibro is a good guess, but there are mimickers too. I've just been diagnosed with osteoarthritis and I'm surprised at how much pain that can cause...yuk. I make sure I take Glucosamine Chondrotin and I really like the drinks because they seem to help more. Could be something in the bones/joints. You would need different tests to find it. Some people get that young. Good luck and, trust me, I feel for you. (((Hugs)))

 

[Jena]

midwest mom

hi, no went to doctor for that fibro doesnt' give you swollen joints and nodules. that would be good because than i wouldn't need the mri. i was hoping that or ra. i think i'm going to call my gp on monday and set up a quick blood draw it'll be alot less than the specialist and mri to test for one more auto immune, the sceloderma can't spell to save my life lol. my friend had it the one who passed away a few mos. ago sudden heart attack. she had alot of skin issues, yet she also had swollen joints and nodules. just a thought. there are two diff kinda apparentley. my mom called me today and said hey what about that?

so it's worth the 60 bucks he charges with-o insurance and lab will bill for blood work. if it isnt' than just gotta wait it out till end of holidays. i took motrin today and it got me thru day with the swelling in the knees though. that was cool! still wanted to scream all day long i'm sooo fatigued and irritable it isnt' even funny.

 

[HaoZi]

Differential diagnosis: Many disorders can simulate RA:

• Crystal-induced arthritis
• Osteoarthritis
• SLE
• Sarcoidosis
• Reactive arthritis
• Psoriatic arthritis
• Ankylosing spondylitis

from http://merckmanuals.com/professional/sec04/ch034/ch034b.html

 

[Jena]

i'm getting more ****** by the minute lol. he ran tests on all of those. i'm sitting here right now with-blood work results from agust when the swelling began and they tested me for auto immune's and lyme and i was told lyme was positive, yet than went to a lyme specialist who told me they were totally wrong he got other blood work from the western blot and i do not have lymes disease at all.

only reason i pulled it out is because the swelling is getting worse again tonight, my ankles are in pain as well, my necks hurting bad and i'm walking with a freaking limp now. it's just absurd the whole thing. more nodules on fingers popped up today. which isn't causing any problem with writing or typing they just look odd. it's just kinda ridiculous. and left hands numb and tingly along with-arm.

i obsess it's what i do lol. so since it's gotten worse this time around, i was fine a bit ago especially when difficult child was in hospital my body was great thank goodness. just would love to know what it is so i can deal with-it. it ususally doesn't get this bad. i'm hoping this dr didnt' screw up reading results and it is lyme. who knows.

 

[HaoZi]

Get the Lyme retested since the doctors didn't agree. Have you checked into lupus as well? Not all docs look for that even when testing for autoimmune disorders. There's a lot of other connective tissue, joint, or nerve disorders that are rare or overlooked as well.

 

[Jena]

i'm looking at the blood work now. lupus was done by my gp and the e.r. back than both negative. r.a. negative, most auto immune's negative except for scelderma cant' spell and ms ofcourse. i emailed the dr who said it def. was not lyme and asked what exactly in the lab work made him come to that conclusion just so i can know. i don't know what made me pull that out, the old blood work. probably susie's post about Jess. made me think of lyme again. because alot of what jess has except the constant shaking screamed lyme to me. it's hard to beat from what i've heard.

i mine as well pop more motrin get the ice bag and chill out because i'm not going to get answers anytime soon now. gotta last thru xmas before mri's. i will though go back to gp just for a blood work re check. i guess i should be grateful that it hasnt' kicked up this entire time with-difficult child's crisis in hand. it waited a while. i usually dont get a reprieve so long. i was pretty good from sept till now. tha'Tourette's Syndrome while. hey thanks for the links and research i appreciate it

 

[HaoZi]

I hope you find a way through this soon. I have minor chronic pain, but it's either carpal tunner/ulnar nerve issues or old injuries from when I played sports in my youth. I can't imagine the kind of chronic pain I see so many board members or their kids dealing with. *hugs* to all those dealing with it, directly or indirectly.

 

[Jena]

you should try some herbals for it, maybe that would help. hand pain is the worst you do everything with-your hands. yea i guess raising difficult child's has it's price

 

[HaoZi]

Being careful and backing off the comp when it flares up and giving up things heavy in FD&C yellow #5 and adding in vitamin B12 have helped keep it at bay (mostly) for quite a while, I was diagnosis'd with the carpal tunnel when I was 16/17.

 

[Jena]

that sux. i'm sorry. me personally i think i kept it together up till now thru difficult child not eating, hospitals, jerk docs, husband being a pain in my butt, easy child flipping out, sick puppies in hospitals, dogs sick, dryers breaking, yet my legs not working way their supposed to has umm pushed me over the edge so to speak. add in difficult child up ea night as of late till 3, not eating again, overweight now yes overweight believe it or not. yup how'd that happen i know. freaking medications. an overweight child who is now like wow i can't fit into my clothes and im not even eating. well yea i'm done tonight for sure. thank god i have pyschiatrist on monday for her is all i gotta say. i think seroquel's getting chucked it's a piece of **** medication for her now. all it's doing is blowing her up like a balloon

 

[Josie]

Jena, there is a huge controversy over Lyme. If you had a positive Elisa test or a positive Western Blot test, you really should look into it. Chances are the "Lyme specialist" you went to follows the IDSA standards of care. The IDSA uses the CDC reporting criteria as definitive for Lyme. The CDC requires 5 bands on the WB IgG test or 2 bands on the IgM test to be reportable for Lyme, but even they say that Lyme is a clinical diagnosis and it may be Lyme without meeting the reportable criteria. They say it may require treating even if it isn't reported to them for surveillance purposes. (This is what I have been told and seen in the past, but I am not seeing it on their page in my quick search now.) However, most doctors will not treat without it being CDC positive. Some doctors will. That is what Susie was talking about on her post.

Another problem is that some Lyme specific bands are not included in the counted 5 or 2 bands and some that are not specific to Lyme disease are.

I can't even really begin to explain all of this in a single post. You really should read the book "Cure Unknown" by Pamela Weintraub and decide for yourself if you think Lyme is worth pursuing. You may come to a different decision than I did, but at least you will be informed. I don't think it is a good thing to just rely on what the specialist said without knowing the other side to the story.

Here is an article from Columbia University explaining the controversy. http://www.columbia-lyme.org/patients/controversies.html

 

[HaoZi]

Kiddo put on 10lbs, maybe 12, just taking the Zyprexa for a month.

And here's some more on diagnosis'ing Lyme: http://www.cdc.gov/ncidod/dvbid/lyme/ld_humandisease_diagnosis.htm

 

[Jena]

really? was it due to eating or just swollen from medication? see that's what confuses me is that with-o food they can gain. i'm heading to dr tmrw with alot of questions and looking to change medications and geta way from seroquel.

 

[HaoZi]

She was eating like mad with a heavy tendency towards high calorie foods. Some of it seemed to be bloating as well, and I don't think she's taken so many dumps a week since she was a baby. It was hard to keep her fiber/protein balanced well, if at all. You said yours had taken to drinking a lot of milk and all, yes?