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Everything posted by Margaret

  1. Margaret

    Low blood pressure

    <<I have had orthostatic intolerance (which is a subcategory of dysautonomia) for many years>> Hi, Shelley , What's the difference between O intolerance and O hypotension? Dysautonomia is a new one for me and it's been brought up as a possibility for the increase in his BP incidences. I guess the other concern is that his pulse rises 20+ beats when his blood pressure drops. On good days, he's on the floor because *legs weak* or *dizzy, Mom*. On bad days, he tells me *night, all black*....meaning he passed out completely with no warning. On Tuesday, we go see the Immunologist to decide on these IVIg treatments. I'll keep you all posted on that outcome. Thanks so much for all your help....it's so much appreciated. Margaret
  2. Margaret

    IVIg Infusions

    Hi Shelley, No, I haven't made a decision yet and Gareth doesn't see this doctor till the end of November. I am concerned that he wanted another IgA run on Gareth; that has always been High but no one said anything about it. That COULD be an indication of possible kidney problems due to the build up of IgA proteins in the kidneys, per the web, of course. I'll keep you posted. Take care, Everyone. Margaret
  3. Margaret

    IVIg Infusions

    Hi Janey, How bad are the headaches? Migraine types or just dull, aching head? He wants to start Gareth on weekly infusions. Did you have a port put in initially or did they just put the IV in weekly? How long do they take? Thanks for all your information. It really helps when I have to make a decision for him and I have no clue what he will experience. Take care, Everyone. Margaret
  4. Hi Chopper, Yes, the rheumatologist did explain why it was the better of the two and I think I remember it has to do with blood pressure. It has to do with the fact that the veins/arteries in the wrist are larger, so when they shut down and reopen, the blood flow is a larger amount, forcing open all the veins/arteries throughout the fingers. If only one or two fingers shut down, then there's less blood pressure on *each* finger to get them to reopen...thus, leaving open the possibility of them staying closed down for a longer period of time and reducing the blood needed for healing ulcers, etc. Does that make sense? As Shelley says, I am not a doctor so, please, don't quote me on this!!! Take care, Everyone. Margaret
  5. Hi Lisa ....welcome back!!! I hope your knee heals quickly and Grace makes a full recovery. That must have been one scary operation for a Mom to go through. Take care, Everyone. Margaret
  6. Hi Chopper , Gareth's hands blanch out completely white from the wrists down. They slowly turn red, and then, back to normal color. His rheumatologist told me this was atypical Raynauld's but the better of the two, because it's supposably better than if the fingers alone blanch out. Either way, it hurts/tingles. Take care, Everyone. Margaret
  7. Margaret

    Exciting Sclero Team Transitions

    Congratulations to all of you!!! Your dedication to giving us the best information and advice is so greatly appreciated. :emoticon-congratulations: Take care, Everyone. Margaret
  8. Margaret

    Gareth update

    Hi Everyone, As usual, I need some advice and want to know if others have had similar problems. Gareth's been having intermittent, severe pains (RLL/RUQ) since the middle of June. He's down 15 pounds and running a low grade fever on and off. All blood work, CT Scan, X-rays, Gallbladder ultrasound, and Endoscopy have been *negative* for anything. The pulmonary doctor said it was Pleurisy, but he didn't see him and the primary care physician said it wasn't. The pain went away for about a week, but came back with a vengeance this past Sunday. They plan to do an exploratory laproscopy next week for Gallbladder Colic and also take out the gallbladder -- just in case that's the problem. My concern is, what if that isn't the problem? This week, I started him on the *Gallbladder diet* but it really doesn't seem to be helping him much. Has anyone had gallbladder issues related to scleroderma that did not show up on testing? Would Sclero cause problems and not be seen on testings? Thanks everyone, Margaret
  9. Margaret

    Gareth update

    Hi Everyone, It's been 3 weeks since Gareth's gallbladder was removed and the pain is gone. The stitches came out last week by the RN and we will finally talk to the surgeon the end of the month. I guess that's the way he does his post ops....one month later. In the meantime, I have the biopsy report that shows the serosa of the gallbladder had a spot that was hemorrhagic and showing non-specific chronic inflammation. The serosa is the outside of the gallbladder! Also, for 2 months I was told that all his blood work was normal but finally recieved all those copies. His sed rate was up to 20 (4-10 is normal) and his C-Reactive protein was 8 (normal is 0 - 1.0). Both indicate inflammation. I'm happy he's getting back to normal. Now we just have to get him in to the Immunologist and find out about these deficiencies. Thank you all for your thoughts and advice. It's so much appreciated! Take care, Everyone. Margaret
  10. Margaret

    Gareth update

    Hi Everyone, Gareth came out of surgery fine. The surgeon said his gallbladder was dilated and the bile duct very long and restricted which is not a good combination. His said the pathology report will let them know if it's Sclero related. Thank you all for keeping him in your thoughts today. You guys are the best!!! On a side note, Ter and I were sitting in the recovery waiting room when the ripple of the Virginia earthquake went through. We looked at each other and said, "Earthquake?!" The irony is that we left Brea, California because of the earthquakes! Who would have thought we'd feel one in the central Pennsylvania mountains! Take care, Everyone, Margaret
  11. Margaret

    Gareth update

    Morning Shelley , I tried to get him in to his Pulmonary doctor but he's not avaiable this week (vacation). The surgeon that is wlling to do it is a friend of the Gastro doctor and he's leaving Sat for vacation. It's today or wait another two weeks. They are concerned about G's low grade fever that he's had on and off for 2 weeks...especailly since he's got those Imunno deficiencies. I will keep all of you posted. Thanks everyone, Margaret
  12. Margaret

    Gareth update

    Hi Everyone, Please, keep Gareth in your thoughts tomorrow. They have decided to take out his Gallbladder (even though all the tests have been negative) and I hope that is the cause of his pain, low grade fever, and weight loss this summer. The surgeon told me the Gallbladder doesn't *play by the rules* and that sludge and sphincter problems can be very difficult to detect. Thanks, once again, for all your help!!! Take care, Everyone. Margaret
  13. Margaret

    Gareth update

    Shelley....I give up!!! he hasn't been in pain since yesterday afternoon!!! Eating normally....happy as a lark....everything. What gives here?!?!? :emoticon-dont-know: Take care, Margaret
  14. Margaret

    Gareth update

    Hi Shelley, Thank you, for explaining, in detail, the pains associated with both. It's hard for me to grasp since I have always been fortunate to be healthy. I am always asking people *Why always Gareth?* I wouldn't mind having something serious once in a while!!! I will call the Pulmonologist on Monday.. He's a great guy and will get Gareth in ASAP. Thank you!!! Take care, Everyone. Margaret
  15. Hi Everyone, I need some guidance for Gareth. He started complaining a month ago that his (pneu)monia (was) back. in the right lower lung (RLL) area. That is where his pneumonias always start so I got him in to the doctor and had a chest X-ray. There was no pneumonia. Since the pain has gotten progressively worse over the past month, the doctor ordered an Ultrasound this past Monday for the gallbladder and liver. He called today and said it was normal. I am assuming the next step would be a GI doctor but what else is there that could possibly be wrong if it's not his lungs, gallbladder or liver? Has anyone else experienced pain in that area --- right lower lung or upper right abdominal area? If so, was the diagnosis related to scleroderma? Thank you and take care, Everyone. Margaret
  16. Margaret


    Hi Susie Q, How did you make out? Gareth saw an Immunologist yesterday, who wants me to get a second opinion, and he talked of the possibility of IVIG infusions. Gareth's is because of IV G immunodeficiencies and MBL deficiency. The doctor also said it's common in those with autoimmune diseases, explaining that one may feed off the other like a continuous circle. Take care, Everyone. Margaret
  17. Margaret

    Right upper abdominal pain

    Morning Shelley, He appears to be feeling better. He doesn't have the grimacing look on his face all day and rarely wants pain meds. He does sit around most days, though, holding his side, and doesn't want to go to work, yet. :emoticon-dont-know: Have a good day, Margaret
  18. Margaret

    Right upper abdominal pain

    Hi Everyone, I need to add to the *Chronicles of Gareth.* :unsure: His CT scan this past Wednesday put us back to step one....or two. His pulmonary doctor did chime in on Tuesday and said he *thought* it was probably pleurisy that is the culprit. Gareth has been complaining all along that *monia back.* He told me that after you have pneumonia several times, that pleurisy is common. Well, why didn't his primary care physician know that! :emoticon-dont-know: He also said it won't always show up on X-rays or scans but is by *process of elimination*. I guess that is why they all *practice medicine.* :excl: The CT scan did show *edema around the small intestine* but I will have to wait till next week, when the Gastro doctor gets back from vacation, to discuss the significance of that. Of course, I just HAD to Google that! Scleroderma is listed as a possible cause. We shall have to wait and see what the doctor says, though. Take care, Everyone. Margaret
  19. Margaret

    Right upper abdominal pain

    Hi Everyone, Well, the good news is that the doctor found no sign of disease such as GERD damage, Watermelon stomach, ulcers, blockages, etc. :emoticons-yes: He did biopsy an area of the small intestine that he said had *excess lymph fluid around it* but that alone would not be causing the pain Gareth has. The bad news is that we are back to step one since he's still in pain. :( Next week, we will have to get him scheduled for a CAT scan. Thank you, for your thoughts today. I'll keep you all posted. Takew care, Everyone. Margaret
  20. Margaret

    Right upper abdominal pain

    Hi Everyone, Thanks for all the responses and it seems like we may be on the right track. Gareth's GI doctor got right on it and ordered an Endoscopy for tomorrow morning, 7/15. But my hubby got a call this afternoon, while I wasn't here, and the hospital told him to *hold off on bringing Gareth in till they call in the morning.* It seems he has been switched from the 10:15 Endoscopy schedule to the main OR schedule! :emoticon-dont-know: I'm whipping off a million questions and he just says *that's all they told me.* Well, don't you know to ask questions?! :glare: Anyways, hopefully, we will get some answers tomorrow. So, please, keep Gareth in your thoughts for tomorrow. Take care, Everyone. Margaret
  21. Margaret

    What is Arthritis?

    Hi Janey , I am surprised that this article didn't mention Gout. It is considered one of the most painful forms of arthritis. Take care, Everyone. Margaret
  22. Hi Janey , Gareth had his yearly physical today and the doctor told me he needed his DPT shot updated. I asked if that was a good idea with his immune system and he said it was the best way to go. Gareth got his updated today!!! I know that in March, I needed a Tetanus shot, and found out that they have added Pertussin to the Tetanus shots for adults. Take care, Everyone. Margaret
  23. Margaret

    Adding Lyrica To My Meds Roster

    Hi Lori , Please, don't take this as a *don't try this med* but Gareth had a horrible reaction to Lyrica when the doctor added it to his Dilantin, for siezures. Within 2 weeks, his thyroid shut down, his liver numbers skyrocketed, and he was hallucinating. He'd look right at me in total fear and say *I want my Mom*. To him I was a robot trying to kill him!!! You will be able to voice the fact that the med isn't doing you well....he couldn't. Just be careful....like you said, it's got mixed reviews. Take care, Everyone. Margaret
  24. Margaret

    Appointment with Scleroderma Expert

    Hi Miocean , Thanks for sharing an uplifting, happy message! Nothing like going *straight to the top* for the best care!!! :emoticons-line-dance: Take care, Everyone. Margaret
  25. Margaret

    Meeting with specialist not good

    <<I have about two years left to live so I will be going wild and making the most of it.>> Lynn , First, having a positive outlook on life is fantastic start. :emoticons-yes: Secondly, two years is a long time, medically speaking, and many break throughs could be around before you know it. I will keep you in my thoughts. Take care, Everyone. margaret