Things I Wish I Had Done

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Even if I had to pay out of pocket, I wish I had gotten a second opinion from  a Specialist in Scleroderma, such as at the Stanford Scleroderma Center of Excellence, UCSF Scleroderma Center, Dr. Boin's Scleroderma Clinic at Cedars Sinai in Southern California.  Some specialists will act as a consultant with your regular rheumatologist.  Don't be afraid to travel to a specialist.  It is well worth your effort and expense.

Scleroderma is a very difficult disease to diagnose.  Once diagnosed, it is important to get the best care by seeing a rheumatologist who specializes in Scleroderma and knows what to look for and what to watch for.  Many university medical centers have a specialized Scleroderma Center where the doctor's are on the cutting edge of new treatments and will prescribe tests and therapies sooner rather than later.  Some of the issues with Scleroderma cannot be reversed, so it is important to address those issues as early as possible.

Some medicines may be presented as optional.  It might be better to take them earlier on in the disease rather than waiting to see how things progress.  One example might be taking medicines such as antacids or blood vessel dilators to help with esophageal reflux or Raynaud's Phenomenon.

Scleroderma is such a rare disease that it is unlikely you will know someone with it who you can talk to.  Joining a support group has many advantages including having people who understand what you are going through, who don't judge you, who are compassionate and who are helpful.  Even if you are afraid to attend, give it a try.  Patients have a wealth of knowledge and helpful suggestions.  

Scleroderma can progress quickly and it is important that you learn as much as you can about your disease.  You need to "take charge" and understand the disease and how it might progress. This can help you identify subtle changes that might be significant, that you might miss if you aren't aware.  Examples could be Raynaud's Phenomenon and the signs of it such as white fingers or extremely cold extremities.  Taking early prevention measures such as keeping warm can help mitigate some of the effects.  Another example is sudden high blood pressure that could be a sign of kidney disease.  If you are not aware of this, it could result in significant kidney issues.

Raynaud's Phenomenon is very serious and many people don't take measures to prevent it.  It can cause loss of tissue, smaller hands as a result, etc.  Raynaud's can also occur internally.

It is important to keep as much movement as possible.  Continue walking and exercising as much as you are able to.  Stretching your muscles helps maintain mobility.  This includes hand and finger exercises as well.  Some patients get serious contracture on their hands that severely limit finger mobility.  There are Yoga programs for Scleroderma patients available online.  

Scleroderma is a very serious medical condition, not to be taken lightly.  Don't ignore little things that come up as they could be a precursor to new symptoms.  Sometimes it is hard to know what is a new symptom because it is so subtle or you adjust to it without realizing it.  Be aware of your normal body functions and let your doctor know of changes.

Writing down your symptoms, your feelings, your fears and your hopes is a good way to keep track of what is going on with your disease.  It doesn't have to be formal or neat or organized, just write things down so that you have a reference.  You can do it on a calendar, in a binder or in an actual journal.  This can be a very positive experience in many ways.  It gives you an immediate outlet, it can give you a retrospective look at how you used to feel and how you feel now.  Many times you feel better and that makes you feel good.  It can also track how you feel  on new medicines and helps identify things that work and things that don't work.

Your suggestion might help someone.