On a strange Medical Journey...any comments welcome!

[Tamylou]

Hi Everyone,

I’ve been reading this site for months now as I was certain my health was taking me in an Auto Immune direction. I’m still not certain where my journey is taking me, but I’m ready to share and participate while going through the process.

I have seen a total of  12 doctors so far- 2 Primary Care Doctors, 2 ER Doctors, 1 Regular Surgeon, 1 Gastro Surgeon, 1 Endocrinologist, 1 Neurologist, 1 eye doctor, 1 Ear Nose Throat Doctor and 2 Rheumatologists. Yikee.

So far my doctors are utterly convinced I don't have an Auto Immune diagnosis, let alone Scleroderma. But I can't get rid of the feeling that I’m dealing with something Auto Immune.

I am normally a very healthy/hearty person. Then in August 2009, I started with a small little burning feeling near my belly button, and then a feeling of some pressure growing on my right stomach area near where I had my gall bladder removed. This prompted me to see a doctor and from the week of that doctors visit on, strange symptom after symptom began to emerge (nausea, lack of appetite, numb/tingly arms, for a couple of weeks lower shins had perfect red dots in pores, Intermittent numbness in face that has gotten better, 30 pound weight loss 1st 2 months, strange chemical like smell in nose, burning/aching muscle/body pain all over, blurry vision, loss of hair on head, breast cyst, body twitches and tremors, Sensitive skin at different times, diarrhea, blood in stool, and many more). The most troubling started in November-My hands and feet started hurting and turning red (palms and soles) at different times of the day...Had about 2 weeks of intense pain, creepy crawly, spasms, itchy etc in my hands and feet-had me in tears) and following this a milder pain stayed. After this passed, my feet became extremely intolerable to cold. My hands do much better but sometimes the cold bothers them and I have a few finger tips on one hand that have intermittent sensitivity. I asked several doctors about the possibility of Raynauds and they all said they didn’t think I had it.  No blatant color changes except the redness that they weren’t concerned with. In addition to the hands and feet problems, I have been experiencing major mouth issues from just about a week into the process (August), my mouth/jaw started feeling painful and tight. I even started getting lines inside my cheeks from biting them. My tongue became whiter than usual and patchy looking (especially on the right side of my tongue and tip-it appears, goes away and returns). At one point, the outside of my neck hurt and felt swollen for about a week-didn’t look swollen, jut felt that way. Then I experienced a week of a bad sore throat that lasted about a week and then began the feeling of something being stuck in my throat. My PCP suggested silent reflux (since I have never felt the burn of reflux or had any issues before) and gave me Prilosec. I took the Prilosec for 2 months but it did not improve my mouth/throat issues. Because it didn’t improve they don’t believe its reflux. In January along with the patchy look, my tongue started feeling swollen and had little scallops or indents on the edges of it. All of these mouth issues plague me daily. I had a couple of weeks in January where I felt my forehead had severe sunburn, and my once oily face is no longer that oily. Something I do not seem to have at this time (whoo hoo-something I don’t have) is any skin issues/tightening etc. and no swollen hands or feet.

This morning for the first time I believe I might have had a color change on my right hand fingers while driving to work. I got into a cold vehicle and even with the gloves on my hands started to hurt a little. About ¾ of the way to work I took off my gloves and my outside finger tips on my right hand from under the nail down to the first knuckle of each finger seemed to be a bronzy yellow color. This puzzled me as I haven’t witnessed a color change other than red palms and soles and keep trying to believe the doctors when they said they didn’t think I had Raynauds. I’m not sure if what I saw was a Raynauds thing. Maybe my eyes were playing tricks, the underside actual fingertips looked fine, it was just the top of the fingers below the nail to the knuckle that seemed to have this bronzy/yellow hue. Never happened before.

On my last visit to the 2nd Rheumatologist in February he said he didn’t feel I had Raynauds (he looked at my hands and feet), and definitely did not have an Auto Immune issue.

I had a low positive (speckled 1:80) ANA test in September 2009 and further testing (CYCLIC CITRULLINATED PEPTIDE (CCP) ANTIBODY, IGG , SS-B ANTIBODY , SS-A ANTIBODY , DNA ANTIBODY (DOUBLE-STRANDED), CRITHIDIA, IFA , HLA (HUMAN LEUKOCYTE ANTIGEN) B27 TYPING , ESR. RHEUMATOID FACTOR, SERUM , C Reactive Protein) all came back negative.  Then they ran my ANA again in January 2010 and it was completely negative. CRP (C-REACTIVE PROTEIN), SERUMCRP (C-REACTIVE PROTEIN), SERUMCRP (C-REACTIVE PROTEIN), SERUMCRP (C-REACTIVE PROTEIN), SERUM CRP (C-REACTIVE PROTEIN), SERUM CRP (C-REACTIVE PROTEIN), SERUMHe also said if my hand and foot problems turned out to be Raynauds it would most certainly be the Primary form.  I have a hard time believing that with such a sudden and severe onset of Raynauds (if it is), my age (39), and other things happening with my body (especially the mouth issues) that this is not related to some sort of disease.

I sent an email to my 2nd Rheumatologist this morning and asked him to convince me that I am not dealing with an Auto Immune problem. I want to stay on top of this.

I would love to hear how other peoples Raynauds started. Was it a period of acute pain (like mine for 2 weeks) and then intolerance to cold?  I felt like I could feel my veins or something in my hands and feet being damaged for those 2 weeks of excruciating pain and from then on my hands and feet have never been the same. Something attacked me :)

I’m so confused if it’s Raynauds or not. Some doctors say absolutely not Raynauds without color changes, others say pain is significant enough to diagnose.

Thanks for listening.

Any suggestions or comments welcome.

[want2bik1]

You mention the sympthoms became more severe around November.  Think you should try to recall what you had done that was different around this time.  Did you have any dental work done, did you get any vaccinations, did you move to a different enviroment, just what changed during that time.  When you mention your problems with the coating on the tongue it suggest to me your body has something in it which it wants to get rid of.  One way of addressing this is Oil Pulling.  You put a Tablespoon of sunflower oil in your mouth and swish it around for 15 minutes.  It removes the toxins from your body.  I use a couple drops of Oregano oil in mind.  Oregano oil is a better antibiotic than your doctor can give you.  If you have any bleeding gums you can look at your teeth as being the problem.  If you have alot of amalgam (mercury) fillings that could be the problem.  If you are eating alot of the wrong kind of fish mercury could be the problem.  If you have had alot of vaccinations that could be the problem.

When you get the wrong things in the body it makes you sick.  There are alot of toxins in our enviroment which can make us sick.  Things such as mercury, arsenic, lead, artifical sweetners, hydrogenated oils, and many of the things that food manufactures put in these process foods are not good for the body.  Anything you buy at the grocery store read the back of the label for the ingredients.  I am a chemist but there are many words in these things I do not understand.  It is best if we try and identify these toxins and eliminate them if we can.

During my illness I tried and identify everything I that could be a cause and eliminate them.  Along with the elimination I started eating a healthy diet.  If you eat the right foods it gives your body the vitamins and minerals it needs to deal with the toxins you get in your body.  Eating raw fruits and vegetables will give your body what it needs to deal with illness.  Eating the processed foods have the bad things in them which your body has to get rid of.  Transfats, hydrogenated oils, and preservatives are NOT what your body needs.  If you eat these things your body will have to get rid of them.  Your body wasn't designed to live on man made food.

I am very healthy now and if you ask me what my disease was I couldn't tell you because the doctors couldn't tell me.  One doctor told me it was old age and I would have to learn to live with it.  Well that is not the way it is.  The name of the disease is not that important.  They are all caused by the same thing, putting bad things in the body.  You can get these things out of the body by changing your diet to include the things which your body was designed to eat.  I feel I was very lucky that the doctors were not able to identify a disease because if they had, they would have prescribed drugs for me.  The only thing drugs do is cover up the problem.  If you want to a diet which has shown good results with these autoimmune disease check out the Paleo diet.  Hope this can help you towards better health.    

[Tamylou]

Boy, my post came out jumbled in some areas.

What it should say is that except for my initial positive ANA (Speckled 1:80) all other follow up tests came out negative and they ruled it a false positive.

They ran the ANA again in January 2010 and it came back negative.