I am not sure what my official diagnosis will eventually be but I have been so sick for over a year now. It started basically in July 2011 but I did not go to the doctor until September 2011. I noticed a knot in my right groin area and it was really painful and swollen. I went to the doctor and he ordered a CT which showed that I had enlarged lymph nodes. To make a long story shorter than it actually is...After three rounds of strong antibiotics with no results the doctor recommended surgery to remove three lymph nodes. From there I started feeling extremely fatigued all the time, low grade fevers, often had trouble breathing, dizziness, shortness of breath, pain in spinal area of my neck, face and hands swelling, eyes aching a lot with a lot of pressure behind them, muscle weakness, sore and swollen lymph nodes, left side muscle weakness to the point that my arm would just drop while I was washing a window or my leg would not pull me up the steps. In May of 2012 I started noticing even more disturbing problems and from there things got a lot worse. I couldn't remember things, I even forgot my own name and there were times when I would look at my husband and didn't recognize who he was, I had numbness on my left side and tingling sensation as well, I had a lot of pain in the back of my head (not "headache" pains but more like on the surface and in the muscles in my scalp), my left foot dropped and I could not speak at all. Over the past year the symptoms have not improved for the most part some have even gotten worse...I have short-term memory loss, muscle tremors (in both arms but most especially in the left, I began taking Carbidopa-Levodopa medicine for the tremors and it does help significantly though even when the tremors are not visible on the outside, I can feel the muscles jerking on the inside of my left arm almost constantly), I cannot drive because things "flying past me" makes me disoriented and nauseated, blurry vision often, I get nauseated when I concentrate on something too hard or try to read, sometimes when I read my eyes jump around or the words seem to scramble on the page or screen, I cannot close my eyes while standing (if I do I will fall backwards), my throat muscles, mouth, jaw, and tongue muscles tire out easily often times making it hard to chew my food or swallow, I have a lot of cognitive problems where I cannot even solve simple word problems or anything the involves a lot of thinking to figure out, pins and needles pain in left cheek as well as some numbness there, I have a lot of pressure behind my eyes and in my head, off balance a lot, trouble breathing at times (feel very short of breath), I get nauseated when I stay up late or “work my mind” too much during the day, neck muscles feel very weak at times, and several other symptoms.
I’ve had 3 MRI’s, 2 CT’s, a lot of blood work, A Spinal Tap, EEG, Heavy Metals Testing, and more and more blood tests. I have been given sooo many different POSSIBLE diagnosis…From Stroke, MS, Migraine Headaches, Lyme disease, Lupus, rheumatoid arthritis, a blood disease, severe depression or anxiety disorders (though I tried to express to them I am not depressed or anxious about anything) and then they moved onto a few “mental” disorders (because they can’t find a diagnosis and all of my tests have come back negative) with a couple of doctors telling me that there was nothing wrong with me neurologically and that I needed to see a psychiatrist. Most recently we have been told that “It could be Conversion Disorder” (which is highly unlikely since it has been going on for over a year now BUT, that doesn’t change the doctors mind from looking at that as a possible diagnosis and thus refusing to consider any other option) OR the latest from my family doctor (at least this is what he said to me though he requested I see a psychiatrist, which I agreed to do) “It could be Chronic Fatigue Immune Dysfunction” ….etc. etc. etc. I have been trying to do some research myself and have had several friends send me their “maybe you have this…” with articles attached. Today I received one such email from a friend with the link to Gluten Ataxia Research. I read the article and well, here I am. My symptoms fall under so many possibilities (especially MS, or another neurological disorder, CFIDS, and this Gluten Apraxia) and one of those possibilities is the Gluten Ataxia. However, I really don’t know where to turn. I have been to 3 different neurologists, a rheumatologist, Oncologist, as well as my primary care doctor and even one Psychiatrist (who was more focused on my childhood and what might have happened to me as a child and suggesting that my past has caused me to be depressed, even though I may not be aware of it and thus causing these physical symptoms now after all of these years, therefore putting me on an antidepressant medication). I tried to explain to him that IF I am depressed it is BECAUSE of my symptoms and the fact that no one has been able to tell me what is going on with my body NOT that I am depressed and that is what is causing me to have these symptoms! So, anyway….I am here to get some support and some possible insight. OR a recommendation pointing me to a doctor who may help. The only thing that has gotten any better is my speech. It began returning to normal last week and within the week has fully returned to normal with only an occasional slurred word or two.
I have never been an exceptionally healthy person….Being diagnosed with asthma, several allergies, IBS, reoccurring yeast infections, ganglion cysts, Mitral-valve Regurgitation, fibroid-adenoma tumors, and other health problems over the course of my 40 years. BUT, NEVER have I had the health issues that I am experiencing now.