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Hello All,

 

I am new to this org and want to say hi.  I am in a limbo of sorts with my diagnosis.  I am 58 with 3 grown children, widow, veteran, horses and plenty of pets!

I have a positive anticentromere of > 8 and titer of 1:620. It went up some.  I went to my general practitioner August of 17 with aching all over.  He did an ANA test.  Referred to rheumatologist.  She found low D of 11.  So took the 50000 iu. Felt a bit better after.  I am at 15.  Off and on white on ring  finger and right hand pinky.  I was actually in a warm room both times.  Now today had again on ring finger after being outside.  All 6 months apart.  Knees hurt,  some numbness in feet and hands but do have carpal tunnel.  Then they found Osteoarthritis in my neck.  It cracks and sounds like rice crispies.   Saw bone doctor for that.  Now the mystery of it all is my sinus are the worst.  Have been for 6 months since this all started.  Never had sinus problems.  Saw dermatologist also for what they thought might be morphea on knee.  Biopsy done came back benign inflammation. 

 

So that is where I am at now.  So howdy all.  My rheumatologist has me at 5 different diagnosis.  Now she has limited Sclero.  I am a work in progress.  

 

Marybeth

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Hi Marybeth,

 

Welcome to these forums!

 

I can understand your frustration with trying to obtain a diagnosis of scleroderma; unfortunately, the nature of the disease is such that it does mean that a correct diagnosis is extremely difficult, not least because the disease affects everyone differently. I believe the average time to reach a diagnosis is six years and it can often be that the diagnosis is changed several times throughout the course of the disease (probably why your rheumatologist has given you five different diagnoses! :wink:)

 

Some of our members have complained of sinus problems due to Sjögren's Syndrome, although sinus troubles are not usually a symptom of scleroderma per se; the symptoms you describe can also relate to other health problems.

 

I would reiterate the advice we always give regarding blood tests; whilst a useful tool to help to obtain the full picture, they are by no means conclusive and the clinical signs of the disease are far more important.  We do recommend that our members consult a listed scleroderma expert as this complex disease does require specialist knowledge and expertise, in order to be dealt with correctly.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi and thank you for your post.  It is so nice that there are folks like yourself to offer support through this time.  My family helps by listening and telling me to be patient as well.  No sense complaining.  Faith and time.  I will be retiring in a couple years and moving to South Dakota.  My biggest concern is finding a specialist out there. Right now I am in the Cleveland area so I think we might have a Specialist here if needed. I will be talking to my rheumatologist on 3/13 and on 3/16 I have a lung pressure test being done. Will go from there.  I am not good with meds but do take Lisinopril/Hctz now.  So blessings and good to know you are there!

 

Marybeth

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Hi Marybeth,

 

We do have a listed scleroderma expert in Cleveland: Cleveland Clinic Scleroderma Program.

 

We haven't got one listed for South Dakota, so it will probably be necessary for you to go out of state to find one (or travel back to Cleveland for appointments.)

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Marybeth,

 

Welcome to Sclero Forums!  I'm sorry you've had so many health issues and a hazy diagnosis.  Like Jo said, it's an average of six years for a diagnosis of systemic scleroderma, so it's not the least bit unusual to have many more questions than answers for the first half decade or so.  Unless this is just "one of those things" that manages to go away on its own, odds are you may still be dealing with some symptoms when you retire.  So it sounds like you should/could perhaps adjust your retirement plans, depending on how things are going to shake out.

 

For what it's worth -- IF you have any flexibility in your plans -- my input would be to try to move within 10 minutes of a major medical center, preferably one with the highest quality ratings in the area.  Then make sure that your insurance allows out of state consults, so that you can still see whatever rheumatology expert you end up with (whether it's lupus or scleroderma or Sjogren's or whatever).

 

My reasoning is that scleroderma is most typically a chronic disease. But it can occasionally cause problems that may require emergency care -- and being out in the middle of nowhere, without fast access to critical care, could be an adverse situation.

 

I live within 10 minutes of a decent hospital.  The nearness has saved my life at least once. If you're going to be in a more rural area, and there's no fixing that, then accept that you might lose out in the event of an emergency -- you, and all your neighbors too -- but in the meantime you can focus on how the reduced stress, easier lifestyle, less traffic, fewer responsibilities, better chance to rest and eat right, may help your health just as much if not more than the fancy big-city life.

 

In essence, think about reducing current stress by sorting out a decision-making tree for retirement plans versus health; or, health and enjoyment.

 

Getting evaluated at an expert center could help, too. It might still be too early for them to identify scleroderma, or it's many friends, but it could get you in the loop for regular follow-ups that would help you, down the road.

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi and thank you for your post.  It is so nice that there are folks like yourself to offer support through this time.  My family helps by listening and telling me to be patient as well.  No sense complaining.  Faith and time.  I will be retiring in a couple years and moving to South Dakota.  My biggest concern is finding a specialist out there. Right now I am in the Cleveland area so I think we might have a Specialist here if needed. I will be talking to my rheumatologist on 3/13 and on 3/16 I have a lung pressure test being done. Will go from there.  I am not good with meds but do take Lisinopril/Hctz now.  So blessings and good to know you are there!

 

Marybeth

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Hi Shelley,

 

Thank you so much for your response. I do have a lot of planning to do.  I am not from Cleveland but came here with my husband as we were both in the military.  I am from out west originally.  It is definitely stressful here and time to move on. I have one son in college yet and will wait for him to graduate and I will try to retire in August of 2020. I am starting to research Dr in Rapid City SD and area.  It will definitely be a LESS stressful way of life.  My kids live home right now but my daughter will be moving with me.  She is looking for work right now In that area. I don’t think I will be too rural as I want to be close to care if needed.  I will be 60 and should be near area with hospital.  I do have two older horses and they are my saving grace.  They are slowing down like me LOL.   I have to leave here, it really has gotten bad.  So it goes.  It all may pass but I have to accept what comes.  One day at a time.

 

My mother has dementia and she is in New Jersey so I have that on my plate as well. I care for so many. 

 

Blessings you.

 

Marybeth

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