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AJM2020

Just found out my wife pregnant with first child/ also tested positive for sclero a few weeks later

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Hi everyone,

 

I'm new here, my name is Aaron. I'm 38 years old male patient. I am writing for advice and support.  I want to stay alive. I've read that the survival rate is only 3-15 years. I must live much longer than that! I just found out a few weeks ago that my wife is pregnant with our first child and then a few days ago I learned that I tested positive for scleroderma.  I don't know too much about it, but I am always very hesitant and cautious about medicinal treatments. I want to beat this  even though everything I have read says there is no cure.  I have not been able to get to a doctor for an official in-house appointment (until June) due to COVID 19.  I have a zoom meeting scheduled with a local doctor tomorrow morning. After reading the symptoms and whatnot- I would guess that I have the systematic kind.  My skin seems pretty normal for the most part (no hard patches of skin I dont think) i do have some rough spots on my hands (most likely from frequent hand washing due to COVID-19.

 

What is the best way to treat this disease when first starting out?  I don't want to make the wrong decision.  I've read a few different things, but am sure that many of you are much more familiar with the treatments than I am.  I have so many questions about this disease.  If any of you might be willing to help me- I am very grateful for your time.  

 

Here is a few things about me health-wise (quick run down):

 

  •          I was in my mid to late teens when I became able to crack multiple parts of my body (ankles, neck, hands, neck)
  •          I was in my mid twenties- i really thought I had cancer because I had bumps on my neck which I thought were cysts... They were actually lymph nodes that flared up and eventually they
             went away so I thought everything was fine
  •         in 2012 I was diagnosed with Raynaud's-  my doctor kind of made it seem like it was no big deal... she told me to just dress warm and wear gloves
  •         in 2013 I was diagnosed with mononucleosis.
  •        in 2016 I had a weird growth on my eye that I had to have surgically removed.
  •        in 2018/2019 I had to have a cyst behind my ear drained (it eventually went away)  and a cyst or wart growth removed from my forehead
  •        In December 2019- I went the the Philippines and got several bug bites and had red lines protruding up my arm ankle and chest (lymphogitis) I rushed to the hospital there in the Philippines.
           and they prescribed me prednisone and claritin. The red lines went away and I was happy to still be alive and be able to return back home to America.
  •        I've had a hoarse throat ever since I started to take the prednisone-  I noticed more dryness and feeling like I need to continually clear my throat (this has gotten worse from January
          until now) - i also have experienced occasional dry/red eyes.
  •        When I returned home to USA-  I went to the hospital for a follow up on the bug bites as I was fearful that I could have potentially got blood poisoning (the red line almost reached my arm
           pit).  I didn't have blood poisoning, but realized that some of my blood work came back as abnormal. From Jan 2020 to current(mid April) my primary care dr has been doing blood work to
          figure out the positive ANA and a few days ago  it came back positive for scleroderma   (SCL-70 Antibody- 2.5)
  •      Ive been noticing that I occasionally lose feeling in my extremities (get tingly) (especially if my wife is resting on me)
  •      Yesterday I noticed horizontal white lines across my fingernails (mees lines?)

 

I have so many questions I:

 

  1.       Do you wish you had done anything differently in your own treatment from when you first started getting treated for this?
  2.       What is the best method of treating this disease?
  3.       What are potential root pathogens?  (cancer, HPV, DNA/ genes)  If DNA- is there a way to change or fix the bad dna?
  4.       What are the best foods to eat?  foods to avoid?
  5.        What other things should be avoided?  (doing certain things, using cleaning chemicals, using power drills, etc?)
  6.       Can exercising / jogging and healthy eating potentially reverse this disease?
  7.       Can QRA (quantum reflex analysis) potentially work as a cure?
  8.       Is continually wearing a face mask more helpful or harmful?
  9.      A few more questions:

     

    1)  Is it better to try not to cough?  Perhaps coughing increases internal scarring?

    2)  Is it good to be continually moving and try to avoid laying down and sitting in stationary positions?

    3)Also- is there a type of hand lotion that is recommended?  I noticed that many of the hand lotions we have in our house have many chemicals in them...

 

I am quite afraid of this and appreciate any suggestions or help that you can provide for me.  blessings you all and thank you for reading this

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Good morning, first off, we are not doctors and are not qualified to answer many of your questions.  I'm glad you're seeing a doctor and hope it's a scleroderma specialist. 

 

Your history indicates a lot of unusual medical events that could indicate other illnesses.  What I do want to say is that the diagnosis of scleroderma is not a death sentence; there are new medications to slow the progression and treat many of the symptoms.  So many people on this site have had this disease for 10, 20 + years.  My own son, diagnosed at age 18, will be 32 next month.  He's doing very well and has been on Plaquenil since age 18.  Stress plays a large part in the progression of many diseases,  so try to focus on the positive, your wife and new baby.

 

Take care, everyone,

Margaret

Mom to Gareth, 31 years old, DS/ASD

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Hi Aaron,

 

Welcome to these forums!

 

As Margaret as advised, we have no medical training and therefore are not qualified to answer your medical queries. I've included a link to our medical pages, which I hope you'll find helpful, but really the best person to advise you is your scleroderma expert.

 

Kind regards,

 

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