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Margaret

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Posts posted by Margaret


  1. Morning everyone,

     

    I finally got Gareth's biopsy report yesterday.from his Dec 28 endoscopy. He does not have Celiac disease   :happy-dance-line: and stomach shows only minor irritation changes due to anti-inflammatory meds.  That's really good news for him and his doctor said not to go on the FODMAP diet.   :yes:   Still no medical reason for the weight loss, but he does seem to have slowed down a bit after dropping 30 #'s.  We will continue to monitor and he's his usually happy, go lucky self, so I know he's not in pain.

     

    Take care, everyone.

    Margaret


  2. Hi Shelley,

     

    I just received a call last night from the office nurse.  He doesn't have a bowel overgrowth, he has a carbohydrate mal-absorption problem.  She didn't explain it much, and said she'd send a "menu" through the mail.   :dont-know: 

     

    I went on line and found this article about how the timing of the breath test explains the two.  This is going to be a major problem for Gareth as it involves deleting all his favorite foods; breads, pizza, pastas, etc., anything that is considered "complex carbohydrates".  He's been lactose intolerant for years and can pop a pill for that; you can't pop a pill for this one.   :wink:   The doctor still wants to do an upper endoscopy, but he hasn't scheduled it yet.

     

    I am curious if this is a new "diagnosis" or something he has lived with for years and we just never knew till he started losing the weight.  I will keep you posted.

     

    Take care, everyone.

    Margaret


  3. Hi Everyone,

     

    Gareth had a Hydrogen Breath test yesterday that spiked to 30,  2 1/2 hrs after starting. They wanted him to wait the full 5 hrs because they wanted a second spike.  He'd have nothing to do with that since he was so hungry and had burgers frozen in his mind !!   :lol:  The test indicates an overgrowth in bacteria in the small intestine.

     

    Treatment is by antibiotics and it would explain the abdominal discomfort and weight loss over the past 5-6 months.  From what I have read, though, most patients spike between 60-90 minutes after drinking the sugar water.  I am waiting to talk to the doctor to see if this would indicate slow motility in the small intestine, too, since it took so long to spike.  I wouldn't think sugar water would be slowed down?  :dont-know:   

     

    The endoscopy is the next step, hopefully, that will be okay.

     

    Take care, everyone.

    Margaret


  4. Morning Shelley,

     

    Thank you, for the smiles and giggles so early this morning.  :lol:  I can remember when I had to ask how to use the emoticoms  :dont-know:   This site has been my life saver the past 10 years.  Yes, 10 years ago I thought Gareth wouldn't be around too long.  I was scared, afraid, and totally confused.   He's had his ups and downs and everyone has been here, with me, to guide me and explain what he is going through. 

     

    Tomorrow morning, he has a Hydrogen breath test, to rule out bacterial overgrowth.  I guess it's one of the first tests to rule out mal-absorption due to slow motility.   :dont-know:  He's lost 30 pounds since June, without changing his diet.  He has a new gastric doctor since the old one moved on to another hospital.  I'll miss her -- she was so nice and really good!   :sad:

     

    On a brighter side, I have a friend that I have known for 3 years now,  who comes into the thrift store I volunteer at twice a week.  She has been suffering with scleroderma/UCTD for the past 25 years!  I never knew and we started yakking for 20 minutes!  :lol:  :lol:   She told me how she's suffering with esophageal issues now, a usual flare, she said.  I told her Gareth was having *issues*.

     

    Thank you, for starting this site and turning it into the best information/educational site.

     

    Have a good day, everyone.   :happy-dance-line:  :hug-group:

    Margaret

    Mom to Gareth, 28 years old, DS/ASD


  5. 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


  6. 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

  7. 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


  8. 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


  9. 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


  10. 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


  11. 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


  12. 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


  13. 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


  14. 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


  15. 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


  16. 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


  17. 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


  18. 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


  19. 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


  20. 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


  21. 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


  22. 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

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