Jump to content
Sclero Forums

jenee

Members
  • Content Count

    23
  • Joined

  • Last visited

About jenee

  • Rank
    Bronze Member
  1. Hi Barefut, My neighbor has MS the progressive kind :) We shared notes one thing she has that I don't is really bad balance, and neurological problems. She doesn't has raynauds or GI symptoms. She doesn't have the red spots, or puffy hands etc She also has alot of nerve pain and painful muscle spasms. She also has memory problems and emotionally problems I.e she gets depressed. Getting depressed can happen to anyone with a chronic disease though :) Memory problems can be due to fatigue. Anyhow, in order to get her diagnosis she had the MRI of her brain plus a lumbar puncture test? Which I believe is what got her the diagnosis, plus here balance is extremely bad, so she failed the neurological balance tests etc. I would go to a neurologists and have them check you out. That would be you best way to find out if it is MS. Plus, like Janey said the combo is rare. Good luck and I hope you feel better :) Warm hug if it is MS that really isn't all that scary either just different. Jen
  2. That was a good catch. Hope all is well with them. Jen
  3. Hi Barb, Welcome to the site!! Sweet is right Plaquenil has anti inflammatory properties might be something to mention to your doctor. How are they treating your Rheumatoid Arthritis? Look forward to getting to know you better. Jen
  4. Hi, My primary doctor noticed the Livedo Reticularis in my legs and arms much like Shelley. It is a lacey rash, look up Lacey rash on the internet. Anyhow, I am being tested for the numerous antibodies to antiphospholipid syndrome. I haven't been diagnosed with APS yet, that is what antiphospholipid syndrome is called. The rash is harmless and doesn't really look scary or bad just something a doctor would notice :) However, the problem with APS is clots, which can be harmful. I am not on Birth Control as Estrogen can make an event like a clot more likely, it is kinda like not taking caffeine with Raynaud's. To get the full diagnosis you need two blood test ( six weeks apart) that are positive, and a event like a Deep Vein Thrombosis or a clot elsewhere or multiple miscarriages. Shelley did you have evidence of a clot? or Miscarriages? Hope that helps. Oh, I believe the antibodies for APS is one of the diagnosis criteria for Lupus. I would look up Lupus on the internet you might find more info. Jen
  5. Hi Kiwi, I am glad to hear that. If it were me, I wouldn't worry too much about the APS. Your doctor has you on Plaquenil which does have anti-clotting properties so that could cover the possible APS. You might want to talk to your rheumatologist about taking a aspirin a day as long as you can tolerate that. The other drugs for APS can have more negative side effects. Good luck :) Jen
  6. I have no experience personally with lung problems and I am not a doctor, but I believe that a 1/3 of CREST patients can develop lung problems. I am not actually sure what type though :) I think the CT Scan would be much better then the PFT test to pick up early problems. The CT scan could pick lung problems or abnormalities before they cause Lung Function Problems. On the flip side PFT is not invasive whereas the CT Scan does expose you to xrays, and is considered more invasive. I wouldn't worry too much, plus some cases of CREST are worse than diffuse, and vice versa it just depends on the person. You could also have Pulmonary Hypertension which is now easily controlled, I believe, but once again I am not a doctor:) Right now I wouldn't worry about anything especially since your PFT is good, that means your lungs are still functioning well, which is really good!!! All in all good news right? Hang in there and oh, welcome!! Jen
  7. Yea, I have read that too several times, but I still forget somethings time to time. I have a problem remembering to use Generic names like NSAID's instead of brand names. I am sure there are other boo boos I make that I am not aware of :) Jen
  8. Hi, I am sorry you are going through all this at your young age, but I justed wanted to say welcome and hi. Jen
  9. I think (I am not a doctor) that the external telangiectasias are benign, and generally just a cosmetic concern. However, if I had them popping up left and right, I would probably want an endoscopy just to make sure there are no internal ones in the stomach, which can cause GAVE. GAVE can cause serious bleeding and be quite serious. GAVE is also pretty rare :) So, I wouldn't worry to much about it. I have no idea about liver hemangiomas but I am sure Shelley is right. Jen
  10. Hi Everyone, No, I was like Shelley thinking the spots on your chest is a normal variant but I will say something to him. It doesn't hurt and who knows it might speed up the diagnosis. There are alot on my chest. I will also mention the ones on my lips and face. Do any of you have these spots on the roof of your mouth, just curious? I am not a fair skinned person, more medium tone I suppose, but I bruise and bleed easily so they could fit in with that. The bruising has been happening since I was a teenager. I was tested for it in the military because I was black and blue literally. I think I was the only one in the military to be ordered to go the doctor :) Anyhow, they never found a cause and it didn't appear to be life threatening so that was that. I think the point is we should mention everything no matter how insignificant we may think it is. Lizzie's case is a perfect example. Although Lizzie I bet you the sclerodactyly is was what got you the diagnosis :) Thanks Guys, Jen
  11. Hi Bragabit, I have a few questions for you :) Do you have any other symptoms like joint pain, fatigue, Raynaud's, and GI problems, etc other than the hard spot. My next question is the pain, fatigue, hard spot, etc severely affecting your quality of life? What are your swallowing problems? What tests did you have for the swallowing problem? Anyhow, If I were you I wouldn't worry too much about the hard spot unless lots of other things are going on. I have the same thing on the side of my pointer finger and it is not a scleroderma skin issue, I don't know what it is. To be frank I have other issues like Secondary Raynauds, Severe GERD, gastris, suspected TMJ (severe jaw pain) along with fatigue, joint pain etc that I am more worried about. I worry about them because they interfere with my well being and quality of life. I am actually more annoyed and frustrated by everything than worried though. So anyhow, my finger is just weird and something to mull over when I am bored. Now, I didn't decide that it was normal or to be more frank not Scleroderma skin hardening - a rheumatologist did with a sub-specialty in Dermatology. In your case I suggest you see a Dermatologist. They will give you the most definitive answer and that will probably ease all your worries. But in the meantime, go ahead and see the PA it won't hurt, they may have some sort of insight, etc. you never know. Swallowing problems are best diagnosed by a GI specialist so if that continues to bother you I would make an appointment with one. I wish you the best and hope that this to turns out to be just a spot of dry skin, nothing else :) Good Luck, Jen
  12. Hi Guys, Well I just came back from the rheumatologist, and I had the GI (gastro intestinal) Upper Endoscopy about a month ago. The endoscopy revealed that I have erosive Esophagitis Grade Two, several areas of erosion in my stomach and a ulcer in the antrum of my stomach. I am taking a PPI (proton pump inhibitor) now called Zegerid. I wasn't too alarmed about the results until the speech lady :) The ulcers are from, I guess, taking naproxen during my period? Perhaps my stomach is sensitive, who knows? He suggested I not take the naproxen but my menstrual cramps are too bad to avoid it, or else I would. I don't take naproxen for the joint pain. I also did a swallow test to see if fluid were getting into my lungs, that was clear, so that is good. I told the speech pathologists about my results from the endoscopy and she freaked me out, saying that is not normal for 34, that's normal for someone in their 80's, etc. She said my upper esophagus looks stiff but given my endoscopy results that is what she would expect to see. I am no longer freaked out :) -- that just lasted a few hours. I go back for a follow with the GI doctor on June 18 and I will insist on a manometry. What else should I ask the GI doctor?. Anyhow, I went to the rheumatologist he checked my Raynaud's checked one finger capillary and said he saw loss of capillary. Brilliant me got a microscope camera and made a photo of my other finger nailbed, I showed that to him, he said he has never had a patient do that. I thought it would be good to have just in case he didn't think to do one, and thought he might appreciate it. He said that is what he saw on the other finger and we had a little conversation about doing the nailbed exam, that he feels it is really good tool to use. He asked a slew of questions, noticed I was a little hypermobile. I showed him the GI results but he didn't seem too interested, I don't know, but I think he noted it. He definitely wasn't freaked out by it. He said you were taking naproxen so that the esophagus damage could be due to the naproxen, so like I mentioned above, I guess the GI doctor needs to do more tests. I would love to go back to not menstruating. He also saw one Telangiectasia thing on the back of my finger that I can't see and pointed it out to me, I should have showed him my upper chest, they are covered with the things now, but I forgot. I forget about the spots. Is this something I should mention? I also forgot to mention the ones on my lips. He thought the red palms went with the Raynaud's. He looked over my skin for fibrosis I imagine and mentioned how he didn't see any Sclerodactyly which was good he said, I should be recording these doctor's visits. Anyhow, he asked about miscarriage, etc, I did have one a long time ago, when I was about 23, I think, at least my mother thought it was. It was very early though I was about two-three weeks late and had severe clots, etc. I told him this and also said I wasn't really sure if I was pregnant, however I have always been johnny on the spot as far that goes and there was large amounts of blood and clots. I do not know, anyone here ever have a miscarriage? Is that what it is like? But frankly I have been very careful as regards to getting pregnant, except for that one relationship I was pretty young. So I do not know if I could give birth normally. I do know that my sister has a few early miscarriages. My other sisters all have babies, the youngest did have preeclampsia which I understand is just high blood pressure. My husband and I do not want kids so I will really never know this. He asked if I had any clots, etc. I said no none found. He asked about dry mouth, cough, heart, etc. and listened to my lungs. Oh, he also ordered a Hepatitis Blood Panel because that had not been done and that could cause nail bed abnormalities as well due to cryoglobulins. I said fine, although the only surgery I have had was just two years ago at Presbyterian which is an excellent hospital. I asked him if you can get that from the dentist and he said no. That was about it then he ordered tests : ANA Centromere Antibody, I think that goes with CREST CCP AB Rheumatoid Arthritis he thinks this is unlikely but he wants to test for it. RF SED Rate CRP C3 C4 RF Then he ordered things I have never heard about or seen APAS order st, I think that is Anticardiolipin Antibodies CLAB ? Anyone have this tested? and knows what it is AP4-Interpt ? Anyone know what this is. LA-PTT I believe another anticoagulant test DRVVT another anticoagulant test B2 Glyco A (relates to the Anticardiolipin test) B2 Glyco GM Oh, and the Hepatitis Panel. I guess he is looking at CREST and APS syndrome. He also explained to me that this would not be a quick diagnosis even if something comes back positive he wants more data. I have a follow up appointment in a month, as a overbook patient whatever that means. So, I am putting on my patient, happy hat and hoping an answer in the blood work at least pops up. Overall, it was a good visit, I did catch myself though getting a little impatient and will have to work on that more. Thanks guys Jen
  13. Hi Miachelj, I am sorry about your troubles and hope things improve. I myself am not diagnosed and do not have as much knowledge as these ladies on the board but will try to help. I am not a doctor or even in the medical field so take my info to form questions for your doctors. I do have a few questions, what are they treating your lupus with? What tests did they do? My understanding is that sclero is treated as the symptoms arise, the ladies here with more experience will chime in if I am wrong. So, anyhow symptoms get treated individually so things like your GERD would be treated with the appropriate medicine. More serious problems would be treated with immunosuppressants. The only difference is I believe Corticosteroids are not recommended for scleroderma patients. So instead of that they use things like Cellcept, Plaquenil and others that I can't recall the name. Others here know way more about this than I :) Anyhow, they are both (Lupus and Scleroderma) treated with the same type of drugs. The only difference is that Lupus tends to respond better to drugs, than Scleroderma. Another thing GERD and difficulty swallowing is a symptom of Sjögren's which is very commonly associated with Lupus and is then called Secondary Sjögren's. With Secondary Sjögren's you will have a positive ANA as well. Another thing that is highly associated with Scleroderma is Secondary Raynaud's. Do you have Raynaud's? Also one diagnostic test they do to distinguish primary raynaud's from secondary raynaud's in the nailfold capillary test. Scleroderma nailfold's have a distinctive patterns. Now, Secondary Raynaud's can be associated with Lupus, Sjögren's and Rheumatoid Arthritis and others like APS . Now these syndromes can have the abnormal the nailfold capillaries as well so.... Frankly, I wouldn't worry to much what they name it as long as they are treating it :) I am hoping that they are treating your lupus/sclero/whatever and you are just concerned about what to call it. By treatment I mean more than the Prilosec for your GERD. In the mean time try to worry too much about what they call it and neither Lupus or Sclero is a death sentence just keep this in mind. Watch a funny movie or a horror movie, my favorite, too take your mind off of it. As far as Depression I am sorry you are feeling that way and I hope you feel happier and at peace very soon. I hope you get some answers in the next doctors appointment as well. Sincerely, Jen
  14. I am so sorry for your loss. :(
  15. Hi Stef, Everyone is right you need to FIRE this guy. You need a doctor you feel comfortable with. I suggest finding a new Rhemumatolgist since this is important to have. Tell us where you live and maybe somebody here can give you a good referral. I am from New Mexico and Janey gave me some good recommendations. Luckily for me I have not gone through what you have, and I think it is terrible that you doctor acted so unprofessional. Personally, I think behavior like that is uncalled for and you did not do anything wrong! Please tell us where you live and someone will chime in with a good recommendation. If you need anything question, support or whatever please post here, these women are terrific and will help you through whatever. I hope you have a bright and sunny day :) Sincerely, Jen
×
×
  • Create New...