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.
Thank you so much for your response!!!
First off, I was wrong...it was an MRI that I had done (of the head) in Oct 2012 (not a CT Scan)....and it was negative for any abnormalities or lesions.
My family doctor is a great lady but I don't think she is looking at the big picture. She's not one to order a lot of bloodwork, I have to often request it.
Recent bloodwork at end of April....liver enzymes good, Hgb AIC is normal (though is close to the high end of normal range), CRP was done then too and it was negative. My doc really only ever orders TSH, and end of April it was normal but on the lower end of normal. I'll be keeping an eye on this as I don't want to become hyperthyroid. (You see, last August, after 10 years on the same dose of Synthroid my TSH level was very very high, T4 very low).......dose went from 112mcg to 125 mcg (slowly) then 137mcg which I've been on now for a few months. I believe perhaps my thyroid became out of wack due to me taking my Zoloft at the same time as my Synthroid each morning (the former I've learned can decrease absorption)....so at this higher dose I need to keep an eye on things. And I believe she once ordered Magnesium at my request and it was fine. I do know that my last Vit D level was very low. Vit B12 level good.
I was lead to believe last October that I was being referred to a Neurologist and that I'd be seeing one when I had my EMG studies done...but it didn't turn out that way. And I guess because my MRI was negative, nothing was pursued.....but I feel that I need a good proper neuro assessment.
I don't know why the issue with my hands occur only when I'm sleeping. I did try wrist splints for 3 months (due to EMG doc saying I had carpal tunnel) but no improvement. Initially when these hand issues started, I wondered about spine issues, at cervical level.....so I'd requested spine xrays which were all normal. Even when I have a nap my hands get the tingling/pins & needles. I've even tried to position my hands when sleeping so that there's no flexion at the wrist/no pressing on radial or ulnar nerves. So it makes one think it's still something in cervical spine and it's the position of lying down that's significant.
When I told my doc originally about the stress incontinence (urinary only at that time), she felt it was likely due to decreased tone o pelvic floor muscles. Due to having interstitial cystitis (which hasn't flared up in over a year), I did once see a doc at a Pelvic Floor Clinic and she told me I did have reduced tone and to do Kegels.....but then in Nov 2012 I saw another doc related to my IC and he didn't feel my decreased tone was all that significant/obvious.
As for the CT scan I mentioned I'd had for gallbladder, I ended up having my gallbladder removed laparoscopically in April 2010 (gallstones, having more frequent GB attacks; liver and pancreas were fine at that time).
Something else I experience periodically, that I am wondering if it could be an "MS Hug" (had actually never even heard about that until doing some reading last night). I've had episodes where I feel almost like gas pains to just below my sternum, come on quickly, makes no difference if I've just eaten or not.......then feels like a cramp/tightening feeling to sternum/substernal area.......and it radiates around to my back. It's excrutiating. The first time it happened I thought it felt so much like a gallbladder attack though of course not possible as GB removed.....but I did read that 30-40% of ppl without a gallbladder can still get stones that inflame/get stuck/cause pain going down common bile duct. The first time this happened I felt like I could barely breathe as the tightness, almost like a tight tight band around my upper abdomen/chest/mid back...... Told doctor, she sent me for a ultrasound. I didn't expect it would necessarily show anything, as I figured IF it had been a stone passing down my CBD, when the pain stopped that meant the stone had passed...so what would U/S show? Of course it showed all was fine. Would have had bloodwork too (liver function, pancreas, CBC, glucose, etc)...all normal.
It was happening more often. I would try the things I did when I had gallbladder attacks, get down on all 4s and rock back and forth, try to walk around......no relief. Thought it was maybe a gas bubble....would try Gas-X, Pepto. Doc said she figured it was an 'esophageal spasm' and that I had "nutcracker esophagus." She came to this conclusion based on nothing. I don't believe I have this at all.
I hate when it happens because I always think, "what if I was having a heart attack and I'm just assuming it's not?" A lot of the symptoms are similar to heart attack symptoms in women (the pain, tightness, sweating, short of breath). I live alone so it scares me. the longest an episode lasted was 40 minutes. I just pace around the house. It feels muscular, like a cramp.....light tightness......like a spasm. I haven't had one of these for 3 months. However it seems that from what I've read, an MS Hug lasts a lot longer than 45 minutes.