Monday, July 5, 2010

Crisis = Opportunity
The Beginning

My name is Andrea and I have started this blog for several reasons. For about nine months I have been dealing with a bunch of weird symptoms that included tingling in both legs, electric buzzes or pulsations in my head, intermittent nausea, exhaustion, brain fog, unexplained weight loss and intermittent chest pain that felt like a heart attack but turned out to be GI related. I've been to over ten doctors in the last seven months and for a while it was looking like all of my problems were related to the over-production of histamine. That may still be a contributing factor, we'll see.

Then a few weeks ago I lost the ability to swallow normally. It started to feel like food was getting stuck in my throat and after that sensation lasted for four straight days, I got worried that there was actually something stuck in there.

Everyone told me that it would be okay, it was just acid reflux or some kind of esophagitis. I spent a long time trying to find a GI or ENT that could perform a transnasal esophagoscopy (TNE) on me to figure out what was wrong without needing to use sedation, since I react badly to so many medications and chemicals.

The ENT I saw referred me for a modified barium swallow with cine-esophogram, and I feel so blessed that he did. I was able to arrange one for the very following day thanks to an absolutely amazing speech-language pathologist working for one of the best hospitals in my town. She moved heaven and earth around to squeeze me in before her summer vacation. I will never be able to thank her enough.

As it turned out, the results really weren't what we were expecting. Thankfully, there was no sign whatsoever of cancer or a stricture. That is certainly a huge relief.

Unfortunately, there was no sign of esophagitis either. Rather, what the radiologist found was a "lazy esophagus". As he described it to me, the wave function was simply not working correctly. He asked if I had been diagnosed with any other problems and when I told him that I do suffer from both Hashimoto's Thyroiditis and also Interstitial Cystitis/Vulvadynia, his eyebrows shot up and his eyes widened. He nodded. Then he said, "I think what is happening with your esophagus is directly related to your autoimmune conditions." Then he asked me if I often get a funny feeling in my mouth after eating something, and if it is ever coupled with tingling or cramping in my hands.

He was pointing toward Scleroderma.

I am a 34 year old woman, which happens to be the exact demographic that scleroderma usually affects. It often goes hand in hand with hypothyroidism, and its presenting symptom can often be esophageal dysmotility.

When I looked up scleroderma on the internet, what I really wanted to know was, what is the life span or prognosis.

I have three children under the age of five. My greatest fear is leaving them and that they will not have me as their mother to help them navigate childhood and their teen years. They mean everything to me, along with my husband.

When you read about scleroderma online, things look pretty bleak. Apparently there are three different kinds - limited, diffuse and sine. Some people get only skin involvement which progresses very slowly over many years, and they generally have an excellent prognosis in terms of life span.

Others have a fast moving, aggressive form of scleroderma that spreads quickly across many body surfaces and affects internal organs.

The limited scleroderma (formerly CREST) stands for calcinosis, Raynaud's Phenomenon, Esophageal involvement, Sclerodactyly (a tapering deformity of fingers) and Telangiectasia (small red spots on face or inside mouth).

Scleroderma Sine Scleroderma is where you have internal organ involvement but no obvious skin problems. This happens in up to 5% of patients.

The scariest thing about learning all this information for me has been trying to determine what kind of scleroderma I am presenting with, if that is indeed what I have. I have suffered for years from mild Raynaud's syndrome and GI complaints, never guessing for one second that it could be part of a greater illness. At the present time I have zero skin involvement and I know that my kidneys and heart are in great shape. So, I will need to get my lungs checked and then perhaps I can take a deep breath. CREST traditionally has a much better prognosis than diffuse, although anything can happen to anyone!

The next few months are going to be full of taking steps to get an actual diagnosis, hopefully get my esophagus working again, and trying out the Antibiotic Protocol. I am very excited and hopeful about this, and grateful for the advice and input from Roadback Foundation volunteers. Already I have found two doctors nearby who are willing to treat me with antibiotics and who have both had good success with the protocol. Reading all of the remission stories for Rheumatoid Arthritis and Scleroderma has given me so much hope. This protocol works for so many people, even people who have been much sicker than me for many years. I have a lot of confidence that it is going to work for me too. I am so thankful.

I look at this blog as a way to chronicle my healing journey and raise awareness about alternative methods of healing. Although many doctors will tell you that the AP does not work for scleroderma, I have read hundreds of anecdotal reports now from real people (with pictures, names, email addresses, etc.) who state definitively that it does work. I look forward to being one of those people, and I hope that some day my blog will give hope to another newly diagnosed person terrified by what they are learning and facing.

Much love and healing to you.


  1. Hello, if you write this... can you contact me? I have the same symptoms, but also have heart and lung involvement... I would like to ask some questions and if you had success.... Thank you. Rick

  2. Hello, if you write this... can you contact me? I have the same symptoms, but also have heart and lung involvement... I would like to ask some questions and if you had success.... Thank you. Rick