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Margaret

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Posts posted by Margaret


  1. Hi....welcome to the group.  I am sorry to hear that your sister has scleroderma, especially at such a young age.  My son was diagnosis'd with UCTD at age 18.  He has always had exercise induced asthma and was put on Singulair several years AFTER his diagnosis because his asthma had gotten worse.  Quite interesting thread here!    :emoticon-dont-know:  It has helped his asthma.

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 26 years old, DS/ASD


  2. Hi Judy....I sure hope you had a relaxing holiday today. Sorry to hear of the rocky start.

     

    Alice....my son has had gastric problems from the onset, at age 18.  It's his major problem with this disease. He's currently having swallowing issues and is scheduled (end of Jan) for his yearly endoscopy/stretching treatment. He's got bleeding from the *other end*,  so that will have to be checked out, also.  :(

     

    I hope all who celebrate had a wonderful holiday.

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 26 years old, DS/ASD


  3. Hi Kathy,

     

    The expert said his ANA was *speckled pattern with diffuse cytoplasma*, consistent with scleroderma.  I haven't checked into that for years, so maybe those criteria have changed.  Very little is published about the + Anti-RNA Polymerase antibodies, too, except that he's more susceptible to renal involvement/failure.

     

    Have a good day, Everyone.

    Margaret


  4. Hi Sara

     

    Welcome to the forums. I've been on for about 8 years now because my son had esophageal dismotility, at the age of 18, and we were thrown into the world of scleroderma. His gastric doctor ran all the blood work for scleroderma and his came back with a + ANA, super high SED rate, and + Anti-RNA Polymerase 1/111. His only symptom was the esophageal dismotility and the gastric doctor said *sine scleroderma*. Well, it took forever to get into the scleroderma expert and I was panicking the whole time.....thinking he'd die very young because of some unknown, weird, off the wall disease!! They have come a long way in 8 years!! The expert said no to scleroderma, but yes to UCTD (Undifferenciated Connective Tissue disease). After 9 months of testing and figuring out what to do next, they put him on Plaquinel. It's an anti-malaria drug that is suppose to *jump start* the immune system. I never understood that explanation since scleroderma is the immune system attacking your own body!! Anyhow....it worked and within 2-3 months, his dismotility eased up and he was doing OK.

     

    Over the past years, he has developed mild Sjogren's and Raynaud's. His biggest complains but is chronic pain in his legs and fatigue. Oh....also....depression. His doctor told me that the same autoimmune issues that attack the rest of the body may also affect the brain chemistry. Please, do not hesitate in seeking help for depression/anxiety/sadness etc, especailly since you have a young child at home. The leaders of this forum are great and will walk you through anything. :emoticons-clap:l

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 26 years old, DS/ASD


  5. Hi Greypilgrim ,

     

    I have a 26 years old son who receives IVIg infusions, once a month, due to an immuno deficiency.  His body can fight viral infections but not bacterial infections.  Like Shelley said, he did have an anaphalactic shock reaction, last December, after receiving them for two years..    After  8 months of no infusions, serious medical issues due to infections, they came up with another concoction/brand.  He's had 4, so far, with no reaction.  The cost is upwards of $10,000 + per infusion!!  We are fortunate to have two medical insurance policies, that split the bill.  We could not afford that ourselves.

     

    My son was diagnosis'd with UCTD, at the age of 18, and I can say that I have seen no improvement in that aspect of his medical issues.  He still has the esophageal dismotility, Raynaud's, Sjogren's, hypothyroidism,and chronic pain/fatigue.   At age 18, his blood work was ANA+ for scleroderma and anti-RNA polymerase 1/111, but his only sclero issues were the esophageal dismotility....no skin issues.  Everyone is different in this disease......not sure if infusions would help others or not.

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, DS/ASD


  6. 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:

    Margaret


  7. 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.

    Margaret

    Mom to Gareth, 26 years old, DS/ASD


  8. 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.

    Margaret

    Mom to Gareth,  26 years old, DS/ASD


  9. 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:


  10. 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.

    Margaret


  11. 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

    Margaret


  12. 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:


  13. 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,

    Margaret

    Mom to Gareth, 25 years old, DS-ASD


  14. 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.

    Margaret

    Mom to Gareth,  25 years old, DS/ASD


  15. 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.

    Margaret

    Mom to Gareth,  DS/ASD


  16. 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.

    Margaret


  17. 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.

    Margaret


  18. 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:

    Margaret


  19. 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.

    Margaret

    :emoticons-group-hug:

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