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mutsy67

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About mutsy67

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    Phoenix, AZ
  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 the other put me on an oral steroid and retested after six weeks - the SSA and SSB were both then negative and he declared me 'cured' - LOL!! When I went to the new rheumatologist last week I gave her both sets of blood work and the script history and she said "well, I have no problem diagnosing Sjogren's and starting you on treatment" - huh? I swear I wish there was some consistency between doctors but I do realize that autoimmune is very difficult so finding a good doctor is hard - but seriously they're all over the board! Anyway - the Priolocarpene (sp?) has worked wonders and it was prescribed for 4x/day but so far I've not been able to get more then 3/day in - she warned me about increased sweating and things as it gets into your body - but I live in the desert (AZ) and still don't sweat and sure enough - not a problem. Have had a headache though but it seems to be getting better. all in all well worth it. Good luck and keep me posted! Shari (aka Mutsy)
  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 medication for dry mouth). Five days later I am AMAZED at the number of symptoms I had that I didn't even know. As they recede it is like a piece of my life is coming back to me. I highly recommend the pilocarpene - it is amazing. I take it 4x a day and I can tell the difference about 30 minutes after I take it - I actually have saliva to swallow. Amazing stuff. My voice is no longer hoarse or warbly at the end of the day either. I slept with gum or a throat lozenge in my mouth almost every night since about 1997 - and haven't had to do that since I started on this stuff. Oh - and I didn't have the lip biopsy. Good day, Shari
  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 college 2,000 miles away from us and I was already so emotional about that and all I could think of was this was the end of my family. It has been a hard few months and I've had many trials with finding a new doctor (I have virtually no skin tightening and many doctors think that is necessary). And while looking I was also challenged then with finding a pulmonologist, a GI and a cardiologist. I feel like all I've done is go to doctor's appointments and every other one I went to ended up not knowing enough for me to feel comfortable staying. The people on this forum kept me moving forward on my worst days. Sometimes because I had posted a question or comment but other times when I logged in to just read/lurk. It helps so much to find that there are so many people living full and happy lives with Scleroderma. They give me perspective and reminds me to not limit myself to my diagnosis. Life isn't a sprint - it's a marathon, and I expect to run the good race and I expect you to pass me by! Go for it Ana! In compassion and understanding, Shari
  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 for heart, kidneys, lungs and gastro. I've done all of that and found out that my kidneys are heart are good. My lungs and gastro areas are "involved" - so I now have medicines and information on how to improve those areas and know what to look for in the future for any further develpments, etc. For me - knowledge is power. I want to know everything I can. And yes, it does scare me to read it - but after a few days (weeks) of mulling it over I come out of it and realize how much I have to live for and that it just means I work harder at that than what I was expecting. For me the unknown is scarier then reality. good luck - take a deep breath and surround yourself with the things that make you feel good! Shari
  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 are VERY willing to write scripts and I know I should be thankful to have the meds but . . . that isn't going to be enough on its own. thanks - I love this forum and the fellowship we can provide for each other. Shari
  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 direction. Now I've seen three different rheumatologist's trying to find a replacement. And they don't know squat and won't even admit to it! One said do more bloodwork and come back in six weeks and see the PA - huh? What's the PA going to do - this isn't routine follow-up just yet buddy! Another said that the ANA is highly unpredictable and shouldn't even be used. But still wanted to put me on Plaquenil - what for since he thought I was fine? And the third one said my blood work looks great (liver and kidney function) so "you're good" - I was sputtering around about why can't I move my fingers then? Why do I have Raynaud's episodes? Why do I have so much pain? What are the nodules all over my tendons? He said "that stuff is 'clinically insignificant' and you can just wait and come back when more symptoms present themselves." I don't have the normal skin involvement but I think I may get it later down the road as I have lots of 'patches' of dry scaly skin that doesn't have feeling in it on touch - so something is going on. Not a single one spoke about doing a capillary test either. On my own I went to Cardio (EKG, Echo and stress test all fine) and Pulmonary (PFT's were abnormal and he's started me on some medications and inhalers). The Gastro (swallow test and endo) shows involvment as well and I've started on a medicine for that. I live in Phoenix - there are dozens of doctors for me to choose from but it's a 3-4 month wait for each one. How in the world am I going to find a good one? I want to do 'speed doctor interviews' and get this all over with! We have a Sclero specialist here at Mayo Clinic but he isn't on my health plan. I'd consider paying out of pocket to get started and then use a less qualifed doctor from that point forward - but I can't even get a phone number so that I can speak to someone in his office - they just have one number and you have to schedule an appt. I guess I can still do that but if he doesn't believe in Sine Scleroderma then I'll be wasting my time AND a bunch of money! Oh dear - I am so frustrated. I'm sorry - I just needed to vent. Thanks for listening - I feel better already! shari (Mutsy)
  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. There are many meds out there for the reflux and if it were me I'd start on one now - you can aspirate and cause even more severe lung problems. The only thing is that I found that several of them interferred with other things I was taking (Prilosec interferes with Methotrexate, most of the others with Iron that I take for Restless Legs, etc.) I ended up with Zantac 150's BUT only my pharmacist knew this information! The rheumatologist, the GI and my primary care physician all recommended Prilosec without even checking - when I told each of them they looked it up and agreed but were quite surprised I was right. So anyway - check in with the pharmacist before you walk out the door with an over-the-counter - please! Shari "no longer expecting my doctor to be a chemist"
  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 that doesn't listen to me and have spent too many years now trying to hold my life together. Unfortunately with Sine Scleroderma I don't look like I have it . . . the joys! Anyway thanks again I appreciate all of the advice and will work on putting together all of my records and get ready for this step. Shari
  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 lower then 850/mo for a year before you even file? Thanks all! Shari
  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 exhausted and cranky! Is this from a collagen build-up in these muscles? Any advice, suggestions or a shoulder to cry on is appreciated! Shari (Mutsy67)
  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 different ways. Also they will give you a target range for your blood sugar (usually 90 - 120) but again you may find that you feel better at 80 then you do at 120 or vice versa. There are many drug choices too so keep that in mind. For my husband exercise one night will lower his blood sugar the next morning by 30 points. good luck - it is a hard illness to regulate but once you get it under control it will be easier to keep it there. Shari (Mutsy)
  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
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