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Everything posted by mutsy67

  1. Hey Mando, hey, yep I know what you mean. I've been so focused on the loss of hand function the past five years that I totally didn't comprehend all the mouth, eye, throat issues that I have. this summer has been an eye opener. I had blood work in June and it showed positive for SSA and equivocal for SSB - so kind of 'positive' for Sjogren's - my current rheumatologist (you may have seen from my previous posts the issues I've had with getting a new rheumatologist) was willing to take that blood work but one of the rheumatologist's that I saw this summer dismissed it completely while t
  2. Hi All, This summer my bloodwork came back 'maybe' for Sjogren's and definate for diffuse scleroderma, but until last week I didn't have a doctor who thought the Sjogren's was 'real' or necessary to treat. My new rheumatologist changed my diagnosis from diffuse scleroderma to Mixed Connective Tissue Disease (MCTD) along with Sjogren's, cREST, Hashimoto's (thyroid) and small fiber neuropathy. I went from fighting to get a diagnosis to having too many to remember - haha! Anyway - she has me using eye drops, eye gel (at night), Biotene (mouth wash and gum) and taking pilocarpine (a medicati
  3. Oh Ana, I really, really feel for you. Please stay brave and understand that people love you for who you are not what you have. I found out about my scl-70 this past July by accident when the rheumatologist that I had just started seeing closed her practice. I thought I had RA from what she'd told me. I picked up the copy of my file - there it was positive scl-70 with a nucleor (sp?) pattern and elevated titer. I drove home and Googled it and just sat and stared at the screen with tears running down my face. My son (my only) was moving in a few weeks to start his freshman year of coll
  4. Hi Rainbow! I think there is a 'process' that we go through when we get a diagnosis - much like the grieving process of losing a loved one. Probably fear is the first phase - and I expect it to be an ongoing issue to face (at least for me it is). Support will help you through the fear - whether you get that with friends, family and/or this board. ;) I saw a page once that gave the actual statistics. I don't have it anymore but I know that it was much higher survival rate for CREST then diffuse and it varied a lot depending on the organs involved. To me that meant getting a baseline
  5. Thank you everyone for your replies and comments. Peggy - THANKS - I needed to hear that! My family said the same thing. They know how I used to be and it pains them to see me not get the care that I need. I will carry on for sure but sometimes I just need to hear it from others - so thanks! Gidget - great advice - I may just see if Mayo can be a springboard or something. I have an amazing primary doctor and I know she'll be helpful but wants me to have a rheumatologist for guidance. Our health plan gives our doctors incentives to not spend money on us so it is a battle. Doctors a
  6. This has already been a five year process because my previous primary care physician didn't believe. New primary care physician last year who said go straight to rheumatologist. Waited four months for the appt. and she was wonderful. But then got the letter that she was leaving private practice for research. She got the ball rolling and was going to be very aggressive. ANA was positive for scl-70 with a nucleoclear (sp?) pattern and elevated titer. She started me on Methotrexate immediately (with folic acid). And recommended Gastro consult. I thought things were headed in the right direc
  7. Awesome news Peggy! and a great attitude on your part - what a wonderful Grandma you're going to be! Shari "no longer expecting my doctor to be a chemist"
  8. Hi Laura, I am sorry for all of the trouble you are having - you came to the right place for support tho! The people on this board are incredible. I agree that getting in for pulmonary tests ASAP would be a good thing. I think the more you can get done between now and your rheumatologist appt might be to your advantage. The rheumatologist is probably going to have you do it anyway so why not get a jump on it. The pulmo tests are easy and will tell them a lot about the current condition of your lung capacity. Even if there isn't anything going on right now it is wise to have a baseline.
  9. Thank you everyone for all of your replies! This forum is such a blessing in my life. I am five years into this diagnosis and the doctor that was going to work to get me to conclusion left private practice for research. Unfortunately she won't be available to help with the SSD process and the new doctor is reluctant to write down a diagnosis - I see him for the second appointment this Thursday so will see then (when he gets to review his "own" blood work rather then hers - why is that so important to them??) if he is a 'keeper' or not! Haha - been to too many bad doctors to put up with one
  10. Oh my this sounds terrible - I am so sorry that you're going through this. I've not experienced this but my words of advise are to ask a pharmacist if you might be taking some combination of things that is causing the problem. And they might even be able to point out something different then Immodium that would work better. I recently added a pharmacist to my "team" and am absolutley AMAZED at the difference it has made! Good luck, Shari "no longer expecting my doctors to be chemists!"
  11. Sam I am so sorry to read how much trouble you are having! My hands are failing and I just keep saying - But I NEED my hands! And I know I would be saying the same thing if it were my knees! It must have been a hard day on your daughter too - so excited to show off her new place - poor thing. I have not advise but wanted you know that I'm thinking of you - good luck with the doctors appt. In Sclero Bonds (haha!) Shari
  12. Hi All, I need some advise on Social Security. I have been working but I work less and less all of the time. I own my own business so it has been a matter of shuffling more of my work to my staff. My husband and I have decided that since it can take several years to get approval for Social Security Disability that I need to start that process now. I have two questions: 1) Do you recommend that I start with an attorney or can it wait until the appeal? 2) Is it best to have wages under the 850/mo threshold immediately to show loss of income or can it wait - or should you have wages lo
  13. Hey Everyone! Does anyone else have problems with cramps in their legs and feet at night? This is new just in the past two weeks - every time I stretch or roll over I get a charlie horse in my calves or my feet (yep, my feet!). Also, I have Restless Leg Syndrome and take medication for it but one of my non medical helpers is to flex and hold the muscles - but everytime I do that - a severe cramp. I take Cymbalta for neuropathy and that causes some spasms in my hands and legs so anytime I have one of those little spasms - you guessed it - a cramp. This is horrible - no sleep! I'm
  14. Oh Sheryl I am so, so sorry to hear you are having to up meds - I have had the same kind of news the past fews as I've gotten started down the Sclero road and each new specialist has found something else. But real quick - on the diabetes. If the doctor didn't give you a blood glucose meter - get one. Monitor your blood sugars several times a day (before eating, 20 minutes after and 2 hrs after) and keep a log. It will help you immensley in figuring out which foods effect YOU! A nutritionist can help a lot but we are ultimately individuals and different foods effect different people in dif
  15. My hubby and son both get the gas and I'm convinced - I will do it next time for sure. Dentist explained that it would similiar to drinking a glass (or two) of wine. Oxygen afterwards and if you feel it too much you can have them stop it at any time. Let us know how it works for you! Shari
  16. I think we all know how you feel. If you can't get a doctor (who gets PAID) to care - then who? At least that's how I've felt at times. I know I've left doctors offices in tears of frustration. Why do they have to SEE my pain to believe me? I'm sorry you're going through this but the previous posts have offered some great advice and I can't add anything more - just know that we are here to provide not only a shoulder but also HOPE. Hang in there and don't give up - your family is worth your best effort here. Sometimes I have to bolster myself by asking - if this were my son would I give up ju
  17. Hi Nina, I started with RLS in my teens and it has gotten progressively worse. It came to live with me permanently in my 30s (I am almost 48 now). Currently I take Requip but before that I took various l-doping agents (used in higher dosage for Parkinson's and seizures) - and one of them (Carbidopa) I have found reference to as being a CAUSE of SSc. But the references stated that it was causal when used with a particular diet supplement (can't remember the name now as I didn't take it). So was getting curious if Carbidopa alone or with other things could be implicated. Not that it matters wh
  18. Hi Sam, I "feel" your pain - litterally :rolleyes: sorry - couldn't resist that. I tried Lyrica and it sort of helped but left me so 'foggy' that I couldn't stand it anymore. I switched to 60 mg of Cymbalta and it helped with the neuropathy burning pain - it does come back a few hours before I take it but I get about 20 hours of relief from that. Other than trying a different med I have no advice as I sat up and watched TV all night last night because the other aches and pains were so distracting. I hate the pain the most. Some days I feel like I'm two different people and every
  19. Anyone else have Restless Leg Syndrome? And/or have taken Carbidopa?
  20. Yep have the same problem! I have noticed that since my thyroid is regulated I can brush without gagging (partial thyroid removal in December). Dentist is still hard though. I went to my dentist first time in two years because I had broken a back molar. After they put the crown on I did x-rays and cleaning. The thing we noticed was that on the side that had novocaine (for the crown) I didn't gag at the x-rays or the cleaning - the other side, whole different story. My dentist suggested that next time I might want to try "laughing gas" to reduce the gag reflex. Been using Sensodyne fo
  21. Another great topic! In 1987 I bought a 1967 red (hard top) Mustang. I drove it as my car for many years and people said it must be my alter ego. Car's plates are "Mutsy 67" and yes I still own it but it sits in the garage except for Sunday drives when the weather is nice. Shari
  22. This is an amazing group of people - what a 'fun' family we are! I have a business degree from a big 10 school in the midwest where I met my husband (25 years Aug. 27th!) but after graduation we couldn't find jobs so we moved to Phoenix. No friends, no family and unemployed - we actually had so little we moved by UPS (23 boxes!). I worked for 10 years as a Controller for a manufacturing firm - 60+ hrs/wk. When our son was born he developed severe asthma at just four months. My employer was a second generation all-male company. The only women employed were secretaries - except me. Need
  23. Hi to all! I have to say that I feel overwhelmed by your support and messages - thank you! I'm glad to have found you all - you are an inspiration. I live in Phoenix, AZ. I had a rheumatologist that I liked from May to July but she is closing her practice - I thought she was doing a good job (at least she listened and did the bloodwork to get me this far) but she told me that I do not have Sclero but am predisposed for it. She only referred me to a GI. She did not do the nail-fold capillary tests which seem to be a pretty predictable test - right? So the new guy that I went to th
  24. Hi Everyone, I found your site last March when I had an episode of chest pain with shortness of breath that resulted in an ambulance ride to the hospital. The one symptom that caused me to take the "ride" was that my hands and feet turned "dead" white and then blue. The paramedics couldn't get a pulse out of either wrist or foot (several tried). Since it was Friday and I wouldn't be able to see my primary for a few days I started to google like crazy. Came across Raynaud's and realizing that I'd had similar (but less severe) episodes for years a light bulb went off. And then further links
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