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Posts posted by Margaret

  1. Hi Miocean ,


    I feel so sad that you're in such pain.  You've always been so supportive to everyone and it's just not fair.  I wish we could wave magic wands and make our lives pain free.  Like Sweet, all I can offer is a huge cyber hug and keep you in my daily thoughts. :emoticon-hug:


    Also, since I haven't been on for a while, did I miss a post about your lung transplant....being denied?


    Take care, Everyone.....hugs to all     :emoticon-hug:


  2. Hi Judy, Shelley  & everyone else......yes, it has been awhile since I posted.  I do email Shelley occasionally and she tells me to write the group, but I never get around to it. 


    Gareth had a horrible first part of 2014....not Sclero related, though.  He went into anaphylactic shock last Dec, while getting his monthly IV Ig.  Last BP yelled by the nurse was 48/24.  Thank goodness he was in the Med/Surgical unit!!  Anyway, they didn't believe it was from the IV Ig, since it is a human/natural product, and they tried again in Jan.  Again, his BP started to nosedive.  They stopped the infusions and,  by April, he was on constant antibiotics from ear/sinus/lung infections. He's immune deficient in IgG 2/4  they fight bacterial infections.  Anyway, by July they are doing Mastoid surgery, 2nd time, and they find he's got a nickel size hole eaten from the Mastoid process into the brain all due to an infectious cyst.  I didn't know infection can eat through bone.


    In Aug, they sent him to an Infectious control doctor who tried another IV Ig/steroid/benadryll concoction.  He has tolerated that for two months.  Tomorrow will be his third time with this concoction.  Now that he's back on the infusions, he's healthy.  You've got to love modern medicine!!


    I do read the forums....just never reply.  You guys are all a great source of information.  Wouldn't know what to do without your insights.


    Take care, Everyone.


    Mom to Gareth, 26 years old, DS/ASD

  3. Hi Miocean.....so happy you have been here for 10 years.   :emoticons-yes:    Your life has been a positive inspiration for me, travelling this road with Gareth.


    Take care, Everyone.


    Mom to Gareth,  26 years old, DS/ASD

  4. Hi Everyone,


    In Dec, Gareth went into anaphylactic shock during his monthly IV Ig infusion.  The Immunologist did not think the reason was the infusion itself and wanted to try again this past Monday.  Gareth had 50 mg of Benadryll, Zyrtec, and IV steroids before starting.  Infusion rate was started at 30 (instead of 60) and the highest it was upped was 80, instead of 100. Well, halfway through the second bottle, his BP  started dropping quickly and got to 84/24 before going back up.  Another night in IICU. Today, we had to see the Cardiologist per Immunologist request.   His heart is fine, thank goodness, but he wanted to know the reason for his *clubbing* of fingernails.  What?  Huh?  :emoticon-dont-know: He said it's usually seen in Interstitial lung disease, lung cancer,  or emphysema?  :emoticon-dont-know:  :emoticon-dont-know:


    So, all you Sclero people with Interstitial lung disease, do you have clubbed fingernails?  Does anyone have clubbed fingernails and no ILD?


    Thanks everyone -- you're such a wealth of information and I so much appreciate your helpful insights.


    Margaret   :thank-you:

  5. Hi Miocean....I am glad that results came out fairly well.  How soon before finding out if you made the transplant list? 


    I remember that Gareth wasn't totally cleaned out for his colonoscopy  the last time, either, even though I assured the doctor he had taken all the prep meds and nothing but watery fluid was coming into the toilet.  Interesting about the motility factor for the colon.


    The Hydrogen Breath test is something I have never heard of.   Is that routine to r/o intestinal overgrowth?  That would help the autism community if it were.


    Take care, Everyone.


  6. Hi,   Everyone....well, after writing how well the IV Ig infusions have been for Gareth, we got the shock (no pun intended) of our lives on Monday.  Just after starting the second bottle of his monthly treatment, Gareth went into a severe allergic reaction and anaphalactic (sp) shock.  He started getting very upset/restless,  turning blue,  shaking intensely,  and blood pressure dropped to 48/24.  Needless to say,  it was hard watching the nurses and doctors kick into action.  They jammed in another IV in the opposite arm, yanked the IV Ig bottle off  (there went $10,000 down the drain) , shot him up with Benadryll straight into the IV  (he yelled at that....guess it burns pretty bad), gave steroids, and literally pushed saline into his veins.  Geesh!!  Scared the life out of me and he couldn't tell us what was going on!!  They got him stabilized and moved up to ICU, watched him for the night, and released him late this morning.  He does have some edema in his lungs due to the pushed fluids but they have him on Levaquin to prevent pneumonia.  We will talk with the Immunologist about our next course of action.  It may be something as simple as doping him up on more Benadryll/Zyrtec before starting.  Not sure but will keep all of you posted.  It's been a smooth ride for two years.....doctor said it's not unheard of, though, for someone to develop allergies to meds like this.


    Take care, Everyone


  7. Hi Jo ,


    Thank you,  for finding the article from the Mayo clinic.  The article tells me more of what I wanted to know.  Yes, his 81 is a *strong positive*  BUT it goes on to state *the level of RNA polymerase 111 antibody does not indicate the severity of the disease in patients with SS*.   :emoticons-clap:    


    Hugs to all of you,

    Margaret       :emoticons-group-hug:

  8. Hi Everyone,


    It's been a while since I've posted but have a question about this Anti-RNA Polymerase and can't find any up to date articles.  Gareth has been positive Anti-RNAP 1/111 since Nov 06.  They did 3 tests and all 3 were positive with the titres going up each time.  Last titre was 81(2009) but there are no articles that relate disease to titre numbers.  We have kept him on our primary insurance because of all his medical issues but that will end in May, when he turns 26 years old, and will be strictly Medical Access.  He has a rheumatology appointment in two weeks and I'm thinking of asking for another RNAP test to see if the titres are still going up, but I'm not sure what the justification would be for the asking?  Does that make sense?  I'm wondering if I should get all of them done again....ANA, Sjogren's, ARNP.....not knowing what the future holds for medical testing come May. 


    By the way, he's been doing the IVIg infusions for 2 years now, every 4 weeks, and has only had pneumonia/ear/sinus infection once!!  He is still tired all the time and in chronic pain (legs) but no one seems to understand why.   The doctors just say "it's the autoimmune/connective tissue disease".  Very frustrating!!


    Thanks for all your help,


    Mom to Gareth, 25 years old, DS-ASD

  9. Hi Marsha ,


    My son,  Gareth, has been on Plaquenil for over 6 years now with no eye problems caused by it.  He has developed Sjogrens (dry eyes/dry mouth) even though he is on the Plaquenil and Plaquenil is suppose to be the treatment for Sjogren's.  After 3 months on the Plaquenil,  his esophagus was working again plus it loosened his chest cavity and vocal cords, too. His diagnosis started as sine scleroderma and was switched to UCTD.


    Take care,  Everyone.


    Mom to Gareth,  25 years old, DS/ASD

  10. Hi Zeen ,


    I am not the one to answer all your questions, but I do understand your frustration from the lack of a definitive diagnosis. 


    My son started his journey 11/2006, at the age of 18.  His senior year in HS was horrible.  His symptoms were all internal, + ANA, + anti-RNA Polymerase, major fatigue BUT no Raynaud's, no skin involvement, and no capillary changes.  Initially, they were talking sine Scleroderma but he ended up with the diagnosis of UCTD. 


    It sounds like just a generic "catch all" diagnosis, but it's not.  With so many of these autoimmune issues, one or many may overlap and getting a diagnosis may be very hard.  He was fortunate enough to respond well to Plaquenil and is doing failry well.  Over the last few years, though, he has slowly developed other issues....the Raynaud's  (mild) and Sjogren's.


    Perhaps, others will chime in with more definitive answers but many of us hear/feel your frustration.


    Take care, Everyone.


    Mom to Gareth,  DS/ASD

  11. Hi Clare....I also get the Optical migraines, with no pain.....knock on wood.  First one took me by surprise and scared me....it was totally psychedelic.  There's been flashing black/yellow ones like bumblebees and lightning ones with jagged lines.  Eye doctor agreed with primary care physician about them being migraines.  Make sure you get them checked out/documented just to be sure.


    Take care, Everyone.


  12. Hi Everyone,


    This conversation has me intrigued.  Gareth's Dad had the shinges vaccine when he turned 60 years old because his Dad had a severe case of them.  I am not 60 years old yet and don't *qualify* for the vaccine.  As soon as I turn 60, I will get it to protect myself & Gareth but I thought Gareth could/should get the vaccine, too, due to his immune issues.  Miocean leads me to believe that may not be the case.


    Just curious......any feedback would be appreciated.


    Thanks, Everyone.


  13. Hi Miocean ,


    I am happy for you !!  You deserve the best of the best !!  :emoticons-clap:


    Gareth had to switch many of his doctors, due to insurance issues, this spring.   So far, I like them all, especially his new Gastro doctor.  I've been complaining for over a year now, that Gareth would get up in the morning and act fine.  After he eats, he just shuts down and facial tics start.  A blood test showed that his blood sugar dropped a bit, instead of rising after his meals, so they told me it was Hypoglycemia. 


    Well, last Wednesday,  he had an Endoscopy by his new Gastro doctor.  She could see the esophageal spasms and had to stretch his lower 1/3 of the esophagus because it had become so constricted.  His *total stomach shows signs of inflammation* which she said would cause a nauseated, painful, or just chronic discomfort, depending on what he ate.  My goodness, how would I have known that?!?!?  He always *washes down* his meals....drinks so much milk, juice, or water.  Anyways,  we're still waiting to see if H Pylori is involved in his stomach, but she feels it's from the anti-inflammatory meds.


    Take care, Everyone.  I'm so glad you're all here to help me!!   :thank-you:


  14. Morning Miocean ,


    Thank you for that information.  I do not hear anything when he moves his knees, wrists, etc.   My concern began after reading it was associated with kidney failure and Gareth has the positive Anti-RNA Polymerase 1/111.


    You all are a wealth of information for me....it is so appreciated!!!  :you-rock:


    Take care, Everyone.



  15. Morning Miocean ,


    I am sorry to hear about another possible transplant for you.    :(    I will keep you in my thoughts.  Surprisingly, Gareth's issues appeared to be a more severe case of intrinsic asthma, of which the Singulair appears to be working well, for the time being.  :emoticons-yes:


    Take care, Everyone.


  16. Hi Shelley ,


    I decided to get off the Plaquenil topic and into the name game.  Gareth's old rheumatologist and primary care physician had him listed with UCTD.  I thought his new rheumatologist also felt the same.  When I took him to the new Pulmonary doctor (different medical group than the Rheuma) he has him listed as Mixed Connective TD.  Yesterday, while at the new Gastro doctor (same medical group as Rheuma), I noticed he is listed as Diffuse CTD.    I suppose it doesn't really matter as long as the symptoms are being treated?  Last night,  I tried to read and figure out the differences but my brain didn't get very far!!


    I did read where Sjogren's can cause havoc on the esophagus and stomach, too.  I didn't know that.  He's developed that over the past couple of years, too, on top of the positive blood work for Sclero and residual esophageal dysmotility.


    He is scheduled for an Endo and Colonoscopy in May.  It's been two years since the gallbladder surgery and the new Gastro doctor wants her own look at his insides. When she asked Gareth if he hurt, he did nod *yes* and pointed to his stomach.


    Take care, Everyone.


    Mom to Gareth, 24 years old, DS/ASD

  17. Hi Everyone,


    After two weeks on the Meloxicam and still hearing "hurt Mom"  " pain pills" , the new rheumatologist took him off it and put him back on Plaquenil every day. He also said to try the extra strenght tylenol, 3 times a day, instead of limiting him to 2 times day.  I am always concerned about his liver numbers jumping too high. 


    After the Rheumatologist visit , we were off to the new Pulmonary doctor  (all because of insurance change).  His lungs are stable - no interstitial progression -  which is weird since I never knew he had Interstitial lung issues?  His asthma has gotten worse over the past year, so now he's on Singulair every day, plus his inhaler. I was surprised to see "Mixed Connective tissue disease" on the Pul chart?!?!?  Is that really any different from Undifferentiated Connective TD ?   


    On Monday, we hit the new Gastro doctor.....having fun, yet?!?!? 


    Take care, Everyone.


    Mom to Gareth, 24 years old, DS/ASD

  18. Hi Everyone,


    Gareth met with the new Rheumatologist and he appeared very much aware of Gareth's issues.  I guess he actually read his files and  knew what was going on. He agreed with decreasing the Plaquenil and said to keep it at 3 days a week...for now. When I explained the on going pain for the past 8-9 moinths and no one finding the cause, he said there was no reason for him to be in pain constantly. He suggested he start on Meloxicam...an NSAID medication.  Give it once day for two weeks and report back. He is concerned about it upsetting his stomach but said to try it anyways.


    So...we will wait and see what the next 2 weeks bring as far as pain relief goes.


    Take care, Everyone.


  19. Hi Everyone,


    Kitty -  welcome to the forums and *thank you* for your input.  My son is special needs and doesn't communicate verbally,  so I come to this site to TRY and find out what's going on!!!  He started this journey 6 years ago and also receives IV Ig infusions (monthly) due to immune deficiencies.


    Removing the Plaquenil to 3 days a week hasn't take away the pain. Due to new insurance protocols in our state, we have had a month of switching doctors  (not all his doctors take the new insurance)  and he will now have a new Rheumatologist.  I also have an open invitation to Dr Medsgar's, a Scleroderma specialist, in Pittsburgh. 


    I will keep you all up to date on what the new doctor says/thinks.  I've come to realize that many of these may be overlapping issues and one doctor says Fibromyalgia while another is thinking Rheumatoid.....all on top of everything else he has, the UCTD and SICCA, and immune deficiencies.


    Take care, Everyone, and *Thank you*  for all the input!!!