rastus wrote:Let me start with what has been happening the past few months. Last December I began to experience dry mouth and dry eyes. I also started having tingling and burning in my arms and legs, especially on the left side. I went to my PCP and was tested for Sjogren's. Those test came back negative. Nowithstaning the negative test results, I continued to experience dry mouth, dry eyes and the tingling/burning sensations. I also have experienced stiffness in my left calf. These symptoms continued until late March, when in addition to my previous symptoms, I began to have problems with urinary frequency - I have to go every 3-4 hours now. Due to the neuro symptoms, MS became a concern for me. I went to a neurologist who examined me and ordered an MRI. The scan came back normal. My neurologist told me no MS and good luck. However, just two days ago I began having strange sensations the top of my left foot when I bend my head forward. What is strange is it only seems to happen when I am standing and even then is does not happen every time. Since I knew this could be a bad sign, I contacted my neurologist's office. They had me talk to a PA who told me that since my MRI was clear that my neurologist would likely not recommend any further testing (ie, lumber puncture, etc.). She recommended the "wait and see" approach and stated that even if this did progress, monitoring the situation for a while would not change the final outcome. I am so tired and scared at this point. I am a 41y/o husband and father of 3 young children. My wife really thinks that I am a hypochondriac and that I should believe the doctors. I am just at a loss about what I should do. Any advise would be greatly appreciated. Thanks!
First of all, rastus, you are not a hypochondriac; you are not imagining the symptoms.
From my experience: I have had dry eyes all my life. I have never been diagnosed with Sjogren's disease, but this is one of over 80 "autoimmune" diseases (as is MS). It is quite common for a person diagnosed with one of these diseases to develop a second or third one in time. Decades later tingling in my feet moved up my legs, numbness in my face appeared for several months, a feeling of constriction around my left upper arm was there for several months, too. Three MRIs over this time all came back "normal" or clear. My first neurologist told me that it absolutely could not be MS. He was wrong. Even doctors at the Mayo Clinic missed the MS. In time lesions showed up on an MRI and I got the diagnosis of MS (OVER THE PHONE by the neurologist's office staff – this was the second neurologist, which I no longer see!).
Since you asked for any advice, I offer my standard action plan recommendation:
First, take a deep breath. You may not have MS at all. IF you do, you have found many supportive friends at this site. We come from diverse experiences and hold diverse ideas. We do not agree necessarily in our thoughts on MS; you will probably not agree with some of us either; we only ask for tolerance when we express unconventional ideas.
Second, work with the GP with whom you are most comfortable, who is compassionate and who enjoys being a "disease detective." Begin with a thorough baseline examination including blood tests for your cortisol level, glucose AND insulin levels (these are two DIFFERENT tests), thyroid hormone levels (TSH, Free T4, Free T3, Reserve T3, and antithyroid antibodies), even a liver profile, etc. Ask for a copy of all your test results for your own file.
Third, if you do have MS, start your reading with two books: "Multiple Sclerosis: The History of a Disease" by T. Jock Murray, OC, MD and I think "The Multiple Sclerosis Diet Book" by Roy Swank, MD, PhD and Barbara Dugan is a good second book to read or even have. You may be able to get these through your local library.
Fourth, from this day forward, I encourage you to eat a healthy diet (a good idea whether or not you have MS). Many people find that diet can influence the symptoms of MS. In my opinion, this means a low-carb diet -- removing all sugar (including beer, wine, etc. which have sugar), all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.), all trans fats (These also increase insulin.), and white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible) from your diet. Personally, I think that excess insulin plays a great part in MS. I think that Fatty Liver Disease is also involved. Diet is important. You may find the account of Dr. Terry Wahls and her dramatic improvement interesting (http://www.TerryWahls.com
All the best to you.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"