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Margaret

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Posts posted by Margaret


  1. Morning....Shelley mentioned depression.  I forgot to say that when initially diagnosed, Gareth became severely depressed.  I was told that the same autoimmune issues that affect the rest of the body also affect the chemicals in your brain.  Please, tell your dad to talk to his doctor about this.  He won't be the first to suffer from depression with this disease and it may help him immensely in fighting it.  Stress is NOT good for the body, especially when fighting autoimmune issues.

     

    Take care, Everyone.

    Margaret


  2. Hi,

     

    I feel for you and your dad.  Ten years ago, my 18 years old son, was diagnosed with sine scleroderma, then switched to UCTD. I had never heard of the disease and started reading Doctor Google.  BIG MISTAKE!!  I was sure my son would die soon.  It's been ten years and he's still around enjoying life.  The doctor started him on Plaquenil after diagnosis and he does have internal issues, but they are taken care of as they come. I have no knowledge of the pulmonary hypertension as that hasn't affected him.  

     
    It's hard for your dad and it's hard for you.  So many of us understand but each person affected has different issues.  It's not like the measles where everyone gets a fever/rash or the flu where everyone has the same aches/pains/headaches, etc. 
     
    I can only recommend that he read the medical articles from here and avoid the scary Dr Google articles.  Chime in and ask questions, and someone will point you in the right direction.
     
    You're in my thoughts,
    Margaret
    Mom to Gareth, 28 years old, DS/ASD

  3. Hi Everyone,

     

    Gareth has lost 25+ pounds since June. At first, we thought it was due to more physical activity during the summer, but the weight keeps coming off. We made a quick 4 day trip to the Outer Banks a few weeks ago, to drop grandma off for the winter. We ate fast foods for lunch and restaurants for supper. I put on 5pounds and Gareth loses 3 pounds!!! :dont-know: Oh, and Gareth says "I fine" meaning he doesn't hurt as in stomach ulcer, esophageal dismotility, or abdominal discomfort.

     

    He saw his Immunologist yesterday and he is concerned and thought maybe he has a "mal-absorption issue" due to either his immune deficiencies or his UCTD. Does anyone have mal-absorption issues? His CBC, metabolic panel, chemistry, thyroid, cortisol/ACTH have all been normal. I have an email in to his gastric doctor; guess endoscopy and colonoscopy will be the next procedure, although I wish there was a simpler way to find out.

     

    As always, thank you !!! :thank-you:

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 28 years old, DS/ASD


  4. Hi Dimarzio,

     

    I can't really been more specific since I don't know much about it. Gareth's case is unique in that he started the IV Ig treatments (5 years ago) because of his immune deficiencies, not because of the UCTD, for which he's been on Plaquenil for 10 years. I have read that autoimmune diseases can cause immune deficiencies, but he has always been a very sickly kid and spent many a days in hospitals throughout his life, so I am assuming he had always had the ID and the UCTD came later, at age 18.

     

    I asked his Rheumatologist about his medication a year ago, when the surgeon had such a hard time repairing his neck vertebrae due to the fibrosis around his trachea, esophagus, and carotid artery. She was the one who said that they were using IV Ig infusions for Scleroderma. I have no way of knowing if the infusions have slowed/stop the progression of his disease since he has never had a full body scan to show the extend of initial damage; does that make sense? I do know that his esophagus has gotten worse over the years; it's now looks like a contorted, curly straw due to the hardening and he needs it stretched every 12-18 months.

     

    I wish I could be helpful.....sorry.

     

    Take care, Everyone.

    Margaret


  5. Hi Dimarzio

     

    IVIg Treatment in Systemic Sclerosis.

     

    Above is a website for a new study concerning IV Ig infusions and scleroderma.  Gareth has internal issues from UCTD, has been on Plaquenil for 10 years, and also has immune deficiencies that require the IV Ig infusions every 4 weeks.  When I discussed other treatment options for his UCTD ((following his neck surgery) his Rheumatologist said there was nothing available  for him, as he is already getting the IV Ig infusions.  She was the first to tell me about IV Ig for scleroderma.  It's not cheap, but you can try discussing it with your doctor.

     

    Take care, everyone.

    Margaret

    Mom to Gareth, 28 years old, DS/ASD


  6. Morning Shelley, I don't have any pertinent information or suggestions.  I can share with you a situation I found myself in the past month.

     

    A month ago, I went a Podatrist for aching feet and newly forming bunions.  She asked about medical history and I told her dad had RA, mom has gout, son has UCTD and I was told years ago that I have osteoarthritis.  Well, she told me I was getting bunions because my feet are becoming flat due to the arthritis and she wanted to run blood work.  I told her my previous RA panel and ANA was negative 3 years ago.

     

    Well, the RA panel is still negative but the ANA is now positive; homogenous pattern with nuclear dots.   Being well versed in ANA, I look up and find that is usually seen in (PBC)primary biliary cirrhosis.  Wait a minute; I went in for my feet !!  Primary care physician sends me to gastro doctor (Gareth's doctor) and she assured me it's probably a false positive. I was okay with that, having learned from all of you guys. Anyways, on to additional blood work with complete liver profile, etc.  That did all come back within normal range, thank goodness for that.  BUT, ANA is still positive, this time with speckled pattern!  She has me set up for abdominal ultrasound in two weeks, just to be REALLY sure there is no liver issues.  But, suggested next stop be Rheumatologist IF I have other medical signs of autoimmune disease, which she knows I am well aware of.

     

    So, yes to the positive ANA two times, but no to RA or PBC.   And I still have the bunions growing and will have to wear orthotics to slow them down!

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 28 years old, DS/ASD


  7. Hi Everyone,

     

    Back again in need of some advice.  :wink:   The group home told me today that Gareth is increasingly going through

    underwear.  They say it's as if he doesn't feel a bowel movement coming anymore; that he doesn't feel the need to go to the bathroom.  It just starts coming and then, he says *Oh, oh* and runs off to the toilet, but too late.  This is not diarrhea, just regular stools coming and he doesn't seem to realize/feel the urge to get to the bathroom beforehand.  Is this the bowel incontinence that many of you talk about?   :dont-know: Is it a nerve thing, such as no feeling?

     

    Thanks!  Off to buy more underwear... :sad:

     

    Margaret

    Mom to Gareth, 28 years old, DS/ASD


  8. Morning, Gareth was first diagnosed with sine scleroderma by his gastric doctor.  He's the one who ordered all the blood work after he found the esophagus had hardened and stopped moving food.  On to a children's rheumatologist who didn't want to do anything.

     

    I finally asked the doctor if he could try Plaquenil, only because of all the information received from this group. Plaquenil jump starts the immune system, which is contradictory to what you would expect to work, but it did work for Gareth.

     

    Gareth has never had skin issues, yet!

     

    After reading the initial information on the web, I thought for sure he'd be dead in 3-5 years.  It will be 10 years this November and although he's had his share of ups and downs from the UCTD, he's doing well.

     

    Take care, everyone.

    Margaret


  9. Hi Mom,

     

    I do understand your frustration and lack of ability to help your daughter. My own son was diagnosed at age 18, his senior year in high school. Gareth had positive blood work, major fatigue, and esophageal dysmotility, which were the visible signs. He also had costochondritis, which is the diaphragm hardening and inflamed. Perhaps, they could check that out as a possible cause of shortness of breath/pain.

     

    He developed asthma, although they say it's *exercised induced*. The whole disease process sent him into major depression, too. The doctors told me that the same autoimmune issues attacking the body can affect the brain. Please, keep tabs on that. He was put on Plaquenil six months after initial diagnosis and within 2-3 months was feeling pretty good. His esophagus had loosened up and he could eat fairly well. Due to his diagnosis, he sees a rheumatologist and gastric doctor every 6 months, and a cardiologist and eye doctor once a year. I do think you need another opinion for your daughter from a specialist. My son had all the positive blood work and internal issues but ended up with the diagnosis of UCTD and not sine scleroderma. It's still a major disease.

    Keep posting your concerns. This site has been a life saver for me as they have always answered my concerns.

    Take care, Everyone.

    Margaret


  10. Hi Judy,

    Gareth has a new rheumatologist (trained at JH Sclero center) and when I questioned her about raising his Plaquenil level because of pain/fatigue, she said *no* . Her reasoning was that his pain/fatigue was due to exercising (post neck surgery) and not inflammatory/sclero related. She also stated since he was receiving monthly IV Ig infusions, due to his immune deficiencies, that would be his next line of therapy anyway. If you Google *scleroderma treatment and IV Ig*, you will find many medical articles about it. The immune system obviously has a mind of it's own since Gareth has UCTD and immune deficiencies.....but then again, that's par for Gareth !!! :dont-know::wink: To me, your young friend is reiterating what the rheumatologist said may be the next line of therapy for autoimmune diseases. Obviously, more studies need to be completed for IV Ig infusions and autoimmune diseases, but they are being used for treatment.

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 28 years old, DS/ASD/UCTD/MBL deficiency/Ig 2/4 deficiency


  11. Hi Miocean; it's so hard reading sad posts, but it's a must in life; confronting the good with the bad.

    We're all here to support you; even if we're virtual friends through an invisible connection called the web.

    My heart goes out to you and I will keep you in my thoughts.  You have always been a strong inspiration to me.

     

    :flowers:    :hug-group:

     

    Take care, Everyone.

    Margaret


  12. Hi Keelton,

     

    Gareth also had a 20 pound weight loss, major fatigue, and costrochondritis.  Initially, his diaphragm and larynx were also affected. Being only 18 at the time and the Manometry looking so bad, the gastic doctor ordered the blood work because scleroderma was the only disease he knew of that would cause complete esophageal dysmotility.  

     

    Like others, he has to wash food down with liquids and is on PPI's for severe GERD.  He's had stomach ulcers due to chronic use of anti-inflammatory pain meds.  He had surgery last October and the surgeon ran into major problems associated with internal fibrosis, so I know he's still got *issues* occurring internally that involve other body parts.  Whether you have the diagnosis of scleroderma, UCTD, or MCTD, they all appear differently in each person and the severity can be severe one month and minimal the next.  It's a complicated disease. I hope you can get to a specialist or at the very least, a Rheumatologist who has training for these diseases.

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 27 years old, DS/ASD


  13. Hi Keelton,

     

    My son was diagnosed in 2006 due to entire esophageal dismotility, + ANA, and + anti RNA-Polymerase 1/111. His larynx and diaphragm was also affected; strictly internal issues.  He was only 18 at the time and had no skin issues or Raynaud's.  Initially, the local Rheumatologist said  scleroderma but the specialist said UCTD (Undifferentiated connective tissue disease).  It's just as serious. I never understood what the difference is between UCTD and sine scleroderma.    :dont-know:     Anyways, he was put on Plaquenil, which is an anti-malarial drug that jump starts the immune system, which doesn't make sense either since it's your immune system over reacting in the first place!!   :dont-know:    After 3 months on Plaquenil, he did tell me his esophagus was working again. Now, 10 years down the road and still on Plaquenil, he still has dysmotility in the lower 1/3 portion and his esophagus is twisted and contorted like a curly straw due to the hardening. He has to have it stretched every 12-18 months.  That appears to be his most serious issue with this disease.

     

    This site is wonderful and full of up to date information.  Keep us posted on your journey.      :i-care:  

     

    Take care, Everyone. 

    Margaret

    Mom to Gareth, 27 years old, DS/ASD


  14. Hi Dimarzio,  just  word of caution.   Gareth was put on Lyrica, probably 6 years ago, and did fine for about 4-5 weeks.  One day he went "schizo" yelling and screaming at me to "stay away",  pointing at me and saying "robot",   "kill me", he thought I was trying to kill him!  I immediately got him to the doctor and blood work showed that his liver functions numbers were sky high and his thyroid had shut down.  Since you're not DS/ASD, I am sure you would be able to feel/notice changes before you get that extreme.  Just be careful.

     

    Take care, Everyone.

    Margaret


  15. Hi Everyone.

    Talk about a small world!! I work two days a week at our place of worship's thrift store. A friend comes in all the time, with her therapy dog, and we talk all the time. Her dog needs major surgery, so the local paper ran an article about it asking for funds to offset the costs. They then talked about my friend having a rare disease, called systemic Scleroderma !! She was in today and I asked her *Where's your Scleroderma?!?!?* She just looked at me, in surprise, when I went on to tell her about Gareth . She was diagnosis'd about 10 years ago, like Gareth. Her's is all internal (R, E, T out of CREST), Sjogren's, and MAJOR fatigue. Ohhhhhh, my! I had no idea. I knew she was *sickly* but she never put a name to her problems. She goes to J Hopkin's Scleroderma clinic. So, now I have another avenue to go down whenever I don't know what's going on with Gareth; of course, you guys are always my first place to run to!! :hug-group:

    Take care, Everyone.
    Margaret
    Mom to Gareth, 27 years old, DS/ASD


  16. Hi Miocean,

     

    I did send you two lists of adverse affects, one for predisone and one for Plaquenil.   As Shelley would say, I am not a doctor, but my guess would be the Prednisone. I'm not sure if you have been on that dosage before, but adverse affects can happen at any time.  I have seen several friends trudge through the adverse affects of Prednisone because it is such a powerful anti inflammatory/pain med.  That being said, Plaquenil can cause skin changes.  The med list for monitoring drug interactions is so long for Prednisone, but much shorter for Plaquenil.  An example, Plaquenil shouldn't be taken if you're also on Methotrexate.  

     

    I know it's not much help, but I will keep you in my thoughts and hope you get over this soon.

     

    Take care, Everyone,

    Margaret


  17. Hi Ed.....I'm curious to know new statistics since the one you posted is from 2003....13 years ago.  I'd be interested to see if those numbers have climbed higher.  Where would a person find newer numbers?

     

    Take care, Everyone.

    Margaret


  18. 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


  19. 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


  20. 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


  21. 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


  22. 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

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