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piperpetpete

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About piperpetpete

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    Atlanta, Ga.
  1. Intravenous Steroid

    I did.....back years ago for ocular myasthenia gravis. It wasn't too bad just very high energy and no sleep. My joints felt swollen for a couple days. How long will you be on them?
  2. Myasthenia Gravis

    Hey Judy, I've had Ocular Myasthenia Gravis since 1989 and luckily, it's been pretty mild. It has never progressed to Generalized, thank goodness and no one in my family was ever told they had ANY type of autoimmune problems. I have been Scl-70 positive for a year, could be longer I suppose, but a scleroderma specialist has stated I don't have active symptoms presently. I had burning pain and Lyrica has completely turned that around! All I've been told is once you develop one autoimmune disease, others could follow. I only hope, if I do develop scleroderma, it is mild like the Ocular Myasthenia. Carol
  3. Hi Elizabeth, I too have been dealing with positive SCL70 antibodies since it was discovered last April '09. I ended up going to a sclero specialist in Alabama who stated my symptoms seemed to be neuro related. I then went back to my rheumatologist who thought it might be fibromyalgia and suggested Lyrica. I was having burning pain all over. The Lyrica seemed to work as I am no longer having any burning symptoms. I do have Raynaud's but it is very mild. I've had that for 14 years. I am very blessed as of right now and just continue to enjoy my life each and every day. Since I have had an autoimmune disease, ocular myasthenia gravis, since 1989, which has been very mild in itself, I know I could develop active scleroderma. I just take it one day at a time! So happy to hear you are doing well!
  4. Lyrica

    I haven't been diagnosed with scleroderma however I have the SCL70 marker. After seeing the scleroderma specialist at UAB they think my burning pain is associated with fibromyalgia. Whatever! I'm tired of all the doctor visits! My local rheumatologist put me on Lyrica in January and it is helping. No weight gain whatsoever. This drug does not affect the liver enzymes but can cause blurry vision. I built up slowly to 300mgs. every 24 hours. If you have burning or tingling pain, it probably will help.
  5. Morphea Scleroderma lasts 3-5 years?

    I definitely know where you are coming from......I too,am scl70 positive and have had symptoms that FOUR count them FOUR rheumatologists and the last being a sclero specialist, say aren't related to active sclero. There is NO cure for it. A lot of the information out there states the first 3-5 years can show the most active internal symptoms but that literature can vary. Your best bet is to find a sclero specialist. They can help you navigate thru all the mess that comes with this.
  6. Visit to UAB specialist

    LOL I can do that!!!! I know there are many out there who went years....I'm just working on 15 months!
  7. Visit to UAB specialist

    My next step is the neurologist in Atlanta and testing. My thoughts right now are kind of all over the place. I have the marker, but its inactive at this time and I still don't know what is causing the burning,tingling pain. I guess I just WAIT :D
  8. Visit to UAB specialist

    Finally had my appointment with the sclero specialist at UAB. I was very impressed with the doctor and felt like I was REALLY being heard! However,I am still looking for answers. At this point, she feels I am not having active sclero symptoms. Yes, I have the SCL70 antibodies but she thinks the burning and tingling pain I have had for months is neuro related. Possibly mitro, enzyme.....wants me to have EMG and NSC plus maybe a muscle biopsy. The Lyrica I started three weeks seems to be helping some so that is good. Anyway, wanted to let you guys know what is going now. I guess the journey continues............ :o
  9. WANT TO SCREAM

    No Lucy, you are NOT nuts!!! I too have the burning in my arms and thighs mostly. I also have tingling and muscle twitching. Mine always got worse after exercise but in the last two weeks it's been so bad, I've been bed and chair bound.This , for me, has been going on for 14 months, getting to this point! I've had a EMG AND nerve conduction study but that was back at the beginning, Nov. of '08. I see the sclero specialist at UAB on the 26th. I'll let you know if she has any other thoughts on this.
  10. Bowel problems

    I should probably add here that I've been drinking a blue colored sports drink product the last few days to help with the problem. I know that could be part of the problem. I have no pain at this time and the stool is better. Maybe I need to dilute the drink. I normally just drink water and herb tea. B)
  11. Bowel problems

    I haven't been diagnosed for scleroderma as of yet but UCTD with a SCL70 positive. I see a sclero specialist at UAB on the 26th, thank goodness and for the last two weeks have been bed and chair bound with burning, tingling, muscle twitching pain in my arms and legs. Had some diarrhea and started the BRAT type diet which helped however now I've noticed my stool is green. I've heard that can be a sigh of bacteria overgrowth in the GI tract. What next? I called my rheumatologist.Should I call the gastroenterologist too or can the rheumatologist call in a script for antibiotics? Thanks guys :(
  12. Peripheral Neuropathy and Scleroderma

    Hi guys, I'm curious as to whether this is my main problem with the still yet not firmly dxed sclero. My problem is the pain and burning and tingling....no numbess, or weakness. If I didn't have the pain part, I would feel fine! Mine started with muscle twitching back in Nov .of 08 aft coming in from a 6 mile run.(Long time 26 year runner)then went to quad muscle pull, hip flexor pull, achy quads, and then a three day burning,tingling pain in my arms and quads and behind my knees. Rheumy ran tests positive SCL70 but all other tests, normal....had all baselines done.....normal...have had very mild Raynaud's for 14 years. BUT as time went on I had to change to swimming as the pain etc. would come on abt three to four hours aft working out. It continued to get worse to the point that I am basically bed bound for the last week. The last episode of burning,tingling pain seemed to be throughout my legs, arms, feet along with the muscle twitching and jerking....My appt with the sclero specialist at UAB is in a couple weeks, thank goodness,and the local rheumatologist here has put me on Lyrica for the time being. I can do short episodes of movement around the house...cleaning,etc. but if I do for longer periods of time...say 30 40 minutes....3 to 4 hours later, I am in terrible pain. I haven't been able to fnd anyone with the same symptoms....u "long timers" have any thoughts? When the rheumatologist asked me "Well, if u didn't have the pain, how would u feel?" I said, "fine!" So frustrating cause I NEED to move around......haven't been able to lift weights or swim since right before holiday. I am very concerned that if I can't exercise, I will go down hill very quickly....already am emotionally! :sick2:
  13. I'm new and scared

    Interestingly enough, I too have the pins/needles, tingling, burning and muscle twitching; I don't have any skin tightness as of yet but got down to 5 mgs. prednisone daily last month and my whole body started burning, kind of like inside out. I am going to UAB in Birmingham later this month. As I was telling the rheumatologist yesterday, if you took away the pain, I'd feel okay. She wants me to try the Lyrica until my appointment at the sclero clinic. Do any of you have the jerky, muscle twitching, burning pain?
  14. Pins/needles pain?

    I sure hope that's NOT it but swimming an hour with no fatigue and no breathing problems plus had a clean lung CT scan in July, just wondered. I will bring it up with the sclero specialist I FINALLY get to see next month :emoticons-yes: Thanks guys!
  15. Pins/needles pain?

    Hey guys, just wondering if any of you have the random pins/needles feeling all over your body at times. I have the burning pain episodes in my thighs and sometimes arms after exercise mostly but the pins/needles thing just recently started and it seems quite active after exercise. I am still able to swim laps every other day for an hour and figured this was the least impact stuff I could do. I also still lift weights but only one day a week. Just wondered...any thoughts? :closedeyes:
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