Welcome to ThisIsMS, rovngypsy. I offer you my standard action plan suggestion:
First, you may not have MS at all; as you probably know, it is a differential diagnosis – made by ruling out other possibilities. Very often, it is not easy or quick to diagnose. Before today's tests even existed to diagnose MS, doctors used to diagnose MS on the basis of symptoms and if those symptoms temporarily worsened when the patient sat in a hot bath for a while. IF you do have MS, you have found many supportive friends at this site. We come from diverse experiences and hold diverse ideas. We do not necessarily agree 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. Bartman has given you his thoughts; here are some of mine:
Second, since your family doctor strongly recommends the MS clinic and since you have seen many specialists already, this may be a good course of action; but I usually think a GP or internist with whom you are comfortable, who is compassionate and who enjoys being a "disease detective" is appropriate at first. You and your doctor are in the best position to make this decision. I tend to believe that if you see a surgeon, he will find a solution in surgery; if you see a neuro, he will only see the problem/solution in neurology. I just read an article that summed this up well: "doctors are experts in, and only test for, those parts of the body in which they specialize." A GP can order the tests necessary to rule out some possibilities. As you have probably done with lupus: start at the beginning with a thorough physical, baseline examination including blood tests for your cortisol level (elevated with stress), glucose AND insulin levels (these are two DIFFERENT tests, as you know) – I think the "fasting blood insulin test" is THE most important to request –, thyroid hormone levels (TSH, Free T4, Free T3, Reserve T3, and antithyroid antibodies), even a liver profile, and CRP (C-reactive protein) test (indicating inflammation). Ask for a copy of all your test results for your own file. Personally, I suspect insulin involvement and insulin resistance in skeletal muscles as a major part in MS; this could play into your muscle weakness and spasms (Insulin thickens and stiffens smooth muscles – smooth muscles surround the bladder and intestines and are involved with urinary and bowel incontinence.). Mild cognitive impairment is common to MS and other conditions – there is a connection to excess insulin in MCI as well. By the way, having the diagnosis of lupus, you probably already know that people diagnosed with one "autoimmune disease" are often diagnosed with a second, or even a third.
Third, if you like to read and 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, and most importantly, 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), removing all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.), removing all trans fats (These also increase insulin.), and removing 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. My suspicion is that Fatty Liver Disease is also involved, since visceral fat (belly fat) secretes cytokines (like poison to the internal organs), which lead to increased insulin, which leads to inflammation which leads to more visceral fat… And the cycle goes round and round. Diet is important; in fact, 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?"