Newbie messin' sutff up

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Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 8/25/2008 8:06 AM (GMT -7)   
Hello,
 
   Sorry, I didn't introduce myself sooner. I'm trying to figure this all out, so I hope you will forgive any messed up posts . smhair Is this ADD guy, cuz he looks like I feel, sometimes? I have Crohn's, but most all my symptoms are autoimmune/Arthritis.
 
   I just found my first cousin and he suffers from Reiter's. I really see no point in being tested for the HLA-B27, it's most likely a given for me with my lack of GI symptoms, I share his lumbersom gait, and inablity to get out of bed and walk many mornings. I wonder if the Crohn's is a result of many years of NSAID use. I was a workaholic type, and would just pop Advil and keep going, until the amounts needed to control pain began causing headaches.
 
   I can achieve good control of my symptoms with the SCD, but I'm not great with that. It's a 50/50 deal at this point. Some days I feel like I did in my 20-30's, others I just want to crawl in a hole. When I know how to post better I would like to post my story, but my head is a little scattered right now. I had "unspecfied autoimmune disorder" from 1990-2002 when I was told I have Crohn's.
 
  I also wanted to ask Ducky if his "Graves of the eyes" is actually MG (Myasthenia Gravis). I am concerned about this b/c my childrens Grandfather died from MG and one form seems to affect the eyes only. I think my Husband suffers from one form or both. I am afraid they (MY children)may get a double whammy, because I have so much inflammation in my eyes. One daughter has a droopy appearance in her eyes, but I wonder if it's just cuz she has Grandfathers eye shape. My cousin has a droopy look too, but the Reiters accounts for that, as one of his symptoms is the HLA-B27 Associated-Uveitis. To inheirate both would really Stink. skull
 
   Ok, time to stop this ramble-thanks for being here,listening, and all you do for this forum.
Crohn's for life, just met first cousin who suffers from Reiters-explains sooo much
 
                                              Margie11


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 8/25/2008 3:18 PM (GMT -7)   
Hey Margie.. no my Graves disease of the eyes, is not MG.. It's called either Thyroid Eye Disease (TED) or Graves Disease of the Eyes.. It is in direct correlation of the Hyperthyroidism (Graves) I suffered when I was pregnant with my son.
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR/Methotrexate
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots/HCTZ


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 8/25/2008 11:45 PM (GMT -7)   

Welcome Margie!

Ahh, the 'joy' of autoimmune dieseases....it's like roulette every minute of the day, you never know how you're going to feel.

I'm no doctor or scientist, but I would say your inability to crawl out of bed is due to the disease more than a daily dose of Advil from your past.
 
You posted just fine and I'd love to hear your story. This place is great for venting, letting go, and just your every day moral support. It can be a lifesaver when you feel like you're all alone and no one undestands what you are going through.
 
Take care and hang in there!
****
 


Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 8/26/2008 5:25 AM (GMT -7)   

CaMama and others,

  I am sure the Advil was a huge factor in the chron's becoming active...and the first thing the G.I. said to stop/change-he knew I was taking it from the scope-even before he had records in hand or I had told him. Also in the business I am in I hear many simular first hand accounts.It was not the cause, I remember various symptoms through out my lifetime and know I had inheireted a genetic predisposition, but I am sure (in my heart anyway) self treating joint/soft tissue pain was a factor in my case. It really didn't matter, my husband suffers from syndrom X, Grave's, possibly MG, Apnea, and a host to too many others to name now, and I would have taken that or heavy narcs in order to work and raise my family.Gotta go to work now. Again thanks for doing what it is you do here it is great. 

                                                                                             Margie11
Crohn's for life, just met first cousin who suffers from Reiters-explains sooo much
 
                                              Margie11


Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 8/26/2008 8:04 PM (GMT -7)   
Sorry Ducky,

Sorry I refered to your illness as "His", forgive me-if you've given birth you deserve better.LOL
My husband has large almond eye's, but has none of the protrusion often seen in thyroid disease. He
did appear to have the droopy eye lids of a MG patient during a winter illness/hospitalation this year, however.
His "Storm" lasted 6weeks prior to the radioavtive treatment, he lost 50lbs. I think this was 1977.It seems to me from speaking to several Grave's sufferers at my job that the eye symptoms are more pronounced in people who have a longer, less dramatic "storm" period. I don't think someone could survive for long in the condition he was in.

I was mostly wondering what your symptoms of Graves of the eye's are? I try to stay alert to changes in his condition. Once things get a little outta wack... I think you know the rest all too well.
My biggest fear is that we will both wake up s------ on the same day, then... God only knows.I'm not ready to be at my young adult childrens mercy, they are still too young and resentful for things real and imagined, just begining to see they had things well and good compared to most inner city children.Like for instance...2 parents, 1 healthy. The things that really mater.

going to try to sleep- later,
Margie11
Crohn's for life, just met first cousin who suffers from Reiters-explains sooo much
 
                                              Margie11


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 8/29/2008 2:55 PM (GMT -7)   
Hey Margie... I started showing signs of Graves in Jan 1998, I was diagnosed in May 1998... I got pregnant with my son July 1998... had a complete thyroidectomy Sep 1998 while I was 11 weeks pregnant.. The pregnancy exacerbated my condition, and that's when it started effecting my eyes.. My resting heart rate was 167, and when I was 6 weeks pregnant, I suffered a heart attack.. My condition was deteriorating rapidly, and the docs wanted me to have my thyroid out ASAP.. but I knew it wasn't safe for my baby.. so they admitted me into ICU after my heart attack, and that's where I stayed until after I had my thyroidectomy.. they said that the hormones from the pregnancy threw my Graves into a tailspin and made everything 10 times worse.. My son and I almost didn't make it.. Anyways - back to my eyes.. My eyes started to bulge (when I was in ICU), I've had 3 eyelid surgeries.. they still don't shut all the way, and they dry out very easily, so I have to keep them moisturized.. I also get double vision alot.. :(
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR/Methotrexate
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots/HCTZ


Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 8/29/2008 8:28 PM (GMT -7)   
Thank God you survived. Is your child doing well now? I see so many symptoms slowly developing in my young adult children.I can't imagine going through what my husband did while pregnant. You are one tough cookie. I have been in a mess, crohn's, hives, and joint/soft tissue stuff you know the blah blah and can't grasp these in combo with Graves.
Crohn's for life, just met first cousin who suffers from Reiters-explains sooo much
 
                                              Margie11


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 8/29/2008 9:50 PM (GMT -7)   
My son is great.. thanks for asking.. he has no sign/symptoms of anything so far.. :) we're keeping our fingers crossed... yes, I do understand, it just seems like it's always something, doesn't it? Hang in there!
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR/Methotrexate
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots/HCTZ

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