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Margaret

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Posts posted by Margaret


  1. Hi Franky and Speros.....welcome to the forums.  You can learn a lot here!!!

     

    The flip side of the coin is having all the positive blood work for scleroderma but only internal involvement....no Raynard's, skin issues, etc.  That can lead to a diagnosis of UCTD....Undifferentiated Connective Tissue disease.  Either way, both are serious diseases that need to be treated and followed.

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 27 years old, DS/ASD/UCTD


  2. Hi Dimarzio.....I chuckled to myself when reading your causes. That's life....that's living....I thought

     

    Seriously, though, I have been second guessing Gareth's medical issues since he was born.

    I did everything right before and during my pregnancy, yet he was born with Down Syndrome.

    He appeared so high functioning mentally and physically, that the DS wasn't really a problem.

    Then, he went downhill developmentally....autism was the diagnosis at age 4-5, back when autism was 1/5000

    kids. Now, it's 1/100 kids. Where did his immune deficiencies come from? Where did the scleroderma/UCTD

    come from? Our only genetic background, family wise, was dad's rheumatoid arthritis. I use to work

    in the hospital labs/morgue, before the boys were born....use to be around a lot of Xylene, formaldehyde, etc.

     

     

    I do believe a lot of medical issues come from generations of technology/advancements messing up all of our genes.

    An example....think about back in the early '50-60's. TV dinners were the new rage...put in brand new microwave

    ovens. There was no FDA or quality control gurus. No one knew what was in the saran wrap that covered the meals

    or the output of the microwave. Women have been using cosmetics, hair coloring, and nail polish/acetone removal

    long before the government stepped in with chemical regulations. What about the deodorant (chemicals) that we

    use daily under our arms? Preservatives were sprayed on apples for years before they found it caused cancer and

    other medical issues. Smoking was the *in thing* ..... *cool thing* back when my dad was growing up in the 40-50's.

    I remember helping to pull asbestos siding off the old farmhouse.....long before it was know to cause Mesothelioma.

     

    I have given up trying to think of causes for illnesses....for Gareth and myself. It's life and I'm not 6 feet under!!! I do

    not regret technology or advances in the medical field....in fact, I usually embrace anything that makes my life easier!!!

    It's a good topic for discussion. I'd love to hear other people's thoughts/ideas.

     

    Take care, Everyone

    Margaret

    Mom to Gareth, 27 years old, DS/ASD


  3. Hi Dimarzio,

     

    I do understand your concerns about the odds.  My own son was diagnosed at at age 18 and, upon reading the background of scleroderma, I couldn't believe he had it. My dad did have rheumatoid arthritis, but this was something completely unheard of, with internet information that scared me. Gareth did have all the positive blood work, but only internal involvement. Instead of sine scleroderma, his diagnosis is UCTD.  

     

    At the time, he did not have Raynaud's or skin issues.  It's been 10 years. He was placed on Plaquenil and it has slowed the progression.  He can't take the Methotrexate because he also has immune deficiencies.  I do know the damage it is causing internally. His esophagus has to be stretched every year or so and is twisted and contorted like a curly straw. He recently had neck surgery and it took the doctor an additional two hours to cut through the *wood* to get to his vertebrae. His aorta, esophagus, and trachea had become one solid mass.  I feel very fortunate to have found this site. It's very up to date on information and advice.  He didn't die in the first few years, as I was led to believe by initial research.  He's doing quite well and we take each challenge as it comes.  Do remain optimistic. There are people on this site who have had this disease for 10, 20, 30 years!!

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 27 years old, DS/ASD


  4. Hi  Amanda,

     

    That IS very interesting and I am sorry you both have such unique illnesses.  However, I do bet there are research groups out there that would love to drain you both dry, from blood samples, in order to explore such a unique situation!   :wink:

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 26 years old, DS/ASD


  5. Hi Everyone,

     

    Gareth was in on Tuesday, for an Endoscopy.  He's been complaining since December 6th that his stomach hurt, especially when he walked.  We jokingly said it was from overeating turkey, stuffing, pies, cookies, potatoes, etc., but after several days of him refusing to do anything, we knew it was serious. I figured he needed his esophagus stretched again.  Wrong....his esophagus was fine but he has a stomach ulcer near the opening into the small intestine.  Too many pain meds like Etodolac, Motrin, etc. So, the gastroenterologist put him on twice daily Zantac and Prilosec to get that healed.  I didn't know you could feel stomach ulcers, that they were painful.

     

    He was in to see his new rheumatologist yesterday, second meeting with her.  She never did receive a copy of his neck surgery and didn't know anything about the issues the surgeon ran into. I was explaining the neck issues, the stomach issues, and asked her about whether we should increase the Plaquenil, so we could decrease the pain meds.  Very bluntly, she said no.  She went on to explain, in detail, that she would only increase Plaquenil if there was signs of inflammation, which he doesn't have now.  She also said he's on the right amount to prevent eye damage.  She then told me, because of his IVIg infusions, he's getting double therapy for his scleroderma.  Just keep him on the extra strength Tylenol.

     

    She went on to explain that IVIg is being used for autoimmune diseases that don't respond well to *normal* therapies.  She's right out of John Hopkins and told me that she spent a year in the scleroderma clinic there.  *Thank you* I said!!  I do like her; she's very intelligent, to the point, but can explain things on my level...duh, sometimes!!

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 27 years old, DS/ASD


  6. I want to wish all my friends a Happy Thanksgiving. I am very thankful for all your help/advice.  I am thankful for the doctors who *get it* and really have feelings for their patients.  I am thankful that I'm able to get my baking done tonight before my back gives out!!!

     

     

    Take care, Everyone.            :happy-dance-birds:  

    Margaret

    Mom to Gareth, 27 years old, DS/ASD                :hug-group:

     


  7. Hi Quiltfairy......I DO understand where you're coming from.  I want to know what is in store for Gareth.  I want to know the damage being done inside, if for no other reason than just to prepare for it.  Just to know that the next organ to go will be his kidneys or his lungs, or his digestive tract.  Just to be prepared!!!  I deal with every step but the *not knowing* is worse, especially since he can't tell me the source of his pain or discomfort.  He will see his rheumatologist in Dec and I will give her an update on the mess he had with his vertebra surgery.  Perhaps, she will have some ideas.

     

    You are all in my thoughts daily.....I can't imagine the pain each one of you go through, mentally and bodily.  Gareth is such a happy, go lucky guy, in nature...... it's so hard for me to watch each downhill slide and try to fix it.

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 27 years old, DS/ASD


  8. Hi Judy....I do know what a stoma is but I'm not sure for the reason.....meaning.....is this scleroderma caused?  Does the southern part of the body become harden like the esophagus?  I was under the impression that constipation was the issue with scleroderma.    Do the intestines stop working completely?  Just curious and wanting to learn more.

     

    Have a good day, Everyone.

    Margaret


  9. Hi Jon ..... I hope you are still reading the posts, even if you aren't responding.  When Gareth was diagnosis'd, at age 18, he *shut down* from depression and anxiety.  The doctor told me that the same processes affecting his esophagus/internal organs were affecting the chemicals in his brain.  He has been on depression meds since then....only 10 mg daily, but it did make a difference. Please, don't hesitate to bring this up to your primary care physician.  Depression/anxiety can be a side affect of any autoimmune disease.....it's nothing to be ashamed of.

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 27 years old, DS/ASD


  10. Morning Shelley,

     

    He is doing VERY well.  He only wears the neck brace when up and around during the day, per doctor's orders.  I keep asking if his legs or shoulders hurt and he says no.   :yes:    He is sleeping though the night -- ALL NIGHT -- no waking up and asking for pain meds !   Another   :yes:   !  

    I had to take him back in, on Monday, due to an allergic reaction to the tape used to cover the incision, Tegraderm.  It's the only one that he had not had a reaction to, in the past, but that changed.  That was totally gross; it was beet red, blistering, and pussing.  He also had signs of post op pneumonia, so the doctor put him on antibiotics as a precaution.  He felt well enough last night to go to his Halloween party.  He wasn't about to miss that one!!  :lol: :lol:

     

    Hope all is well with you.

     

    Take care, Everyone.

    Margaret


  11. Hi Everyone,

     

    He's home -- yeah!! :jump-for-joy: I had my arteries mixed up, though. It wasn't the aorta but the carotid artery that was tangled up with the trachea and esophagus. The doctor certainly did not want to nick that!! Anyways, about his insides. The gastro doctor said last February that his esophagus looked like a twisted, curly straw from the distortion caused by hardening. Now, I hear the extent of damage caused in the neck area by the hardening/fibrosis. Seriously, I am concerned about how much more damage he has on the inside. :dont-know: My sister said I should have a PET scan done and I'm seriously thinking about it!!

    Take care, Everyone.
    Margaret


  12. Hi Jon,

     

    My son, Gareth, now 27 years old, was diagnosed with UCTD at age 18.  He has the positive blood work for scleroderma,  no skin issues, just all internal damage.  Needless to say,  I just realized how *silent* of a disease it is with his vertebra surgery, two days ago. 

     

    This is a fantastic site with so much worthy information.  Continue to share your concerns and someone will chime in with useful information.  I am here because he also has Down Syndrome and Autism, making his communication skills very limited.

     

    Take care, everyone.

    Margaret


  13. Hi Everyone,

     

    The doctor came in for a chat today and checked up on Gareth.  He said it was like cutting through wood around his tissues.    :wink:  Not the soft, pliable connective tissue one usually has.  He said he had to take multiple X-rays during it to pin-point exactly where he was through and how much deeper he needed to go. He also said he had his team on some Medical internet site searching for scleroderma related issues in surgery.   :wink: Gareth may have the UCTD label, but he said his insides are harden like wood and that is scleroderma. I did ask him to mail a copy of his report to his new rheumatologist.  Gareth had a horrible night and morning, vomiting from the anesthesia.  Tonight he is much better and doctor said he could go home tomorrow, barring any complications tonight.

     

    Take care, everyone,  :thank-you: :thank-you:  for all the thoughts and well wishes for Gareth

    Margaret


  14. Hi Everyone,

     

    Well, the good news is that Gareth's surgery is finished and his neck vertebra are replaced with cadaver bone and metal plate. He has mobility in legs/arms and could answer the doctor that we had 6 cats after coming out of anesthesia.

     

    The bad news, like Kamlesh, is that his internal body is being taken over by the scleroderma/UCTD.  The surgery was suppose to be 2-3 hrs.  It lasted 7 hrs!!  The doctor got in and found that his esophagus, trachea, and aorta going up his neck was one balled mass of connective tissue.  He told us it took over 2 hours under a microscope, to snip away the adhesions just so he could work on the vertebra!!  He was not prepared for that and had never seen anything like it before.  I am very curious as to what the rest of his insides look like!!

     

    I'll stay the night, at the hospital, with him and he will probably be discharged tomorrow. He's only got a 1-2" incision at the crook of his neck.   He'll have to wear a neck brace during the day for a week or two, depending on pain. 

     

    Take care, Everyone.

    Margaret


  15. Hi....Gareth's ANA was positive, speckled pattern, diffuse cytoplasm, 1:80, per Dr Metzer's lab.  Scl-70 and ACA were negative.  Anti-RNA 1/111 has been positive 3 times.  With those results and esophageal dismotility + internal involvement, he does not have the *scleroderma* dx, but UCTD. 

     

    Hi Jo and Amanda....we got home last week. Loved England and Ireland!!!

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 27 years old, DS/ASD


  16. Hi Everyone,

     

    After what seems like an eternity, we have finally gotten all results from X-rays, MRI, and neurosurgeon on Gareth's neck issues.  The MRI showed severe neural stenosis/compression of spinal nerve from C3 to C7.  Myelomalacia is also present from C4 - C6.  The severity of the arthritic degeneration has the doctor confused.  He showed none of these changes on his neck X-ray 3 years ago -- none of it!!  I have Googled to see if this is an autoimmune issue connected with his UCTD but couldn't find anything.  Any thoughts or words of wisdom?

    The doctor said his severity is the reason for the chronic neck, shoulder, and leg pain/weakness.    :crying:

    The good news is that the doctor remembered Gareth was going on vacation and said he would schedule surgery after we get back.  Surgery will be in late October, with no brace afterwards, but 8-12 weeks of recovery at home.  I said to my hubby *why can't he just break a leg or arm, like a normal person his age?!?!?*   :lol: :lol:

     

    Thanks to all for your help and advice,

    Margaret

    Mom to Gareth,  27 years old, DS/ASD


  17. Hi Shelley.....too funny!!!  Today, he had his teeth cleaned and promptly reported that *Chicken wrap good now*.....meaning he wanted to go to Mc D's and get their large chicken/ranch wrap sandwich.  His favorites restaurants are Applebee's and Garfield's.  Any restaurant will do, though, as long as it's a *real* restaurant....not McD's, Wendy's, BKing, etc!!!  Nothing wrong with his taste buds!!!   :lol: :lol:

     

    Take care, Everyone.

    Margaret


  18. Good morning, everyone.

     

    On Monday, Gareth met with the neurosurgeon, who reviewed his neck X-rays from 3 years ago and said he has degenerative arthritis in his C5-C6.  There were no changes 3 years ago, so the disk degeneration and partial bone fusion has happened since then.

     

    He said that due to Gareth's lack of communication abilities, that it has definitely progressed farther than most people would accept, pain wise. He's got an MRI scheduled for this coming Monday to see if the spinal cord is impinged upon.  If the cord is involved, then surgery is the next step.  If not, it's pain medications, physical therapy, etc.  I will keep all of you posted.

     

    Thanks so much for the useful information. It's so much appreciated.

     

    Take care, Everyone.

     

    Margaret


  19. Hi Logan,

     

    Welcome to the forums. I just want to add that there are other meds that can help with scleroderma symptoms. My son was put on Plaquenil, an anti-malaria drug, that *jump starts your immune system*. It would seem like that is the last thing you would want with scleroderma, but it works on lessening symptoms. Gareth also had internal involvement and his esophagus was hardened for two-thirds of the way down. The plaquenil loosened up the hardness and slowed his progression; sorry, it's the best way I can explain it. He can't take the suppressant medications because he already has Mannose-binding lectin (MBL) and IGg deficiencies, requiring IVIg infusions monthly. He's been taking plaquenil for seven years now.

    Take care, Everyone.

    Margaret
    Mom to Gareth, 27 years old, DS/ASD


  20. Hi Everyone,

     

    You all are a fantastic group of loving and supportive people.  I sincerely thank you all for that! 

     

    Miocean, Gareth has 5 pins in his right hip, too.  He had his hip put back together at age 15.  Like your sister-in-law, the doctor said that if it was a *normal* person, they would have been wheelchair bound, in severe pain. He had no socket left to hold the head of the femur in place.  As a toddler/young kid, he would sit on the couch and pop his femur in and out, while watching TV.  Use to drive me nuts listening to it!!  His only complaint was that his knee hurt....to the point that he couldn't walk far.  Doctor told us the nerve that goes on the outside of the femur was affected/inflamed from the bad hip; it runs to the knee, thus causing people to think it's a bum knee.

     

    Quiltfairy, thank you for the photo.  You've given me more questions!  It looks like they went in from your throat, not the back of the neck?  What sort of pain were you in from the neck vertebrae or does all your pain *run together* ?  Was there noticeable relief from the surgery?  My primary care physician said they will probably go with stronger pain meds, and then,  physical therapy, before jumping into surgery.  You said they fused your C5-C6.  Gareth's is already starting to fuse together because it's bone on bone.  I'm wondering what would the difference be between your fusion and his body fusing them?  Maybe there will be relief for him if nothing is done, allowing his body to heal?  Lots of questions, but will have to wait till we see the neurosurgeon on August 24th.  You can email me privately if you want to explain more.

     

    Once again, thanks.  I'm so glad that I now know he's justifiable when he's ticcing/moaning/twitching.  It's not all the time he's in pain, but when he starts, I have him lie down on a heating pad and it seems to offer relief. He takes Etodolac morning and evenings for pain, and Extra strength Tylenol around lunch time. 

     

    Take care, Everyone.     :thank-you: :thank-you:

    Margaret

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