CaliReader wrote:Hi Lisa,
The fact that you have issues with pain, prickling and numbness, and with muscle control and possible spasticity in your legs/ feet, and with bowel control all at the same time sounds to me like your concerns fit the MS profile. You're an RN. You're already investigating separate conditions that could do this. MS could cover them all. Which doesn't mean that you have it.
To better understand the MS profile, the crazy variety of ways it can present itself, you might want to read the archives of introductions here. Reading other people's stories helped keep me sane during the diagnosis process. It also helped me persist when the medical system wanted to ignore my issues.
I am also over 40. I recently went through 3 years of extremely confusing symptoms that doctors could make no sense of, until last August when my surgeon referred me to a neurologist.
I had lived with paresthesias and intermittent incontinence for years without thinking anything could be done.
I am a patient, not a medical professional, but research is part of my professional skill set. Last Fall and Winter, I researched MS obsessively, until I felt I had an adequate understanding of possible symptoms, likely disease progress, current and future treatment options.
I have read that MRI is a much better tool for finding MS lesions than CT. In my diagnostic process, my neurologist ordered many blood tests for things that can cause neurological symptoms. Once these came back negative, he ordered MRI of the brain and cervical and thoracic spine. I never had a CT for possible MS.
Good luck. Hang in there.
lyndacarol wrote:Welcome to ThisIsMS, Lisa.
To answer your last sentence: it is not unusual to have normal test results in the beginning and still have MS. I myself had three normal MRIs, normal EMG, and even doctors and testing at the Mayo Clinic in Rochester, Minnesota, could not establish my eventual MS diagnosis. My fourth MRI found the MS lesions.
As you may know, before modern, expensive tests were available, doctors used to diagnose MS on the basis of symptoms and if they temporarily worsened when the patient sat in a hot bath for a while. You might try this self test.
As a nurse, you undoubtedly have a good "disease detective" doctor. I tend to believe that if you see a surgeon about a problem, he will find a solution in surgery; if you see a neuro, he will only see the problem/solution in neurology. I once read: "doctors are experts in, and only test for, those parts of the body in which they specialize." You have a good start with testing; I hope it also included these: (1) cortisol level; (2) glucose AND (3) insulin levels (I think the "fasting blood insulin test" is the most important – the optimal result: 3 UU/ML or lower); (4) thyroid hormone levels (TSH, Free T4, Free T3, Total T3, Reserve T3, and antithyroid antibodies). (5) The CRP (C-reactive protein) test (testing for inflammation) and (6) liver tests are also a good idea. Personally, I suspect insulin involvement and resulting insulin resistance in skeletal muscles causes many of my MS symptoms (excess insulin is known to thicken and stiffen smooth muscles;). Many of your symptoms involve the muscles (sphincter muscles and detrusor muscles are smooth muscles – urinary incontinence? Bowel incontinence? "Stiffness"). Insulin is known as "a fat-storage hormone" and you have had a 40 pound weight gain – this may also point you to an endocrinologist and a check of insulin levels. You mentioned having had a CT scan for a gallbladder problem – I wonder if this actually was related to the pancreas/insulin… perhaps a common duct problem.
Since I believe insulin is a major player, I think the diet should not trigger insulin production. Many people find that diet can influence the symptoms of MS. In my opinion, this means a very low-carb diet --remove ALL trans fats; remove all sugar (including beer, wine, etc. which have sugar), remove all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.), and remove white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible). Dr. Terry Wahls had dramatic improvement in her MS symptoms with diet and neuromuscular electrical stimulation (http://www.TerryWahls.com).
Even your profound fatigue could be due to insulin resistance – if insulin cannot open the cells to allow the entrance of glucose, your cells are starved of that energy source.
All the best to you.
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