This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello,
First time here. Don't even know where to start, will try to be concise. And for the record, I'm a registered nurse so have a good understanding of MS. I am a 45 yr old female. No pregnancies/no children.

Went off work Sept 2011 when diagnosed for the first time w/ Major Depression and Anxiety. Family Doc and Psychiatrist (had requested to see the latter as I was felt Psychiatrist was better trained to determine best meds for me) tried me on several different antidepressant meds (Cipralex, Cymbalta, Zoloft) until found one (Zoloft) I could tolerate. Did therapy/counseling as well.

History of health conditions in addition to above: Interstitial Cystitis, Autoimmune Thyroiditis (hypothyroid), Exertional Asthma

In Jan 2012, it seemed suddenly that I began experiencing stress urinary incontinence (when sneezing, laughing, coughing - moreso first thing in morning when wake up with full bladder). Attributed this to my age, I guess.

From about early 2012, started noticing feet/ankles very very "stiff" and somewhat tender at ankles (no swelling) when first getting up in morning, would kinda walk like a duck until up and around and they'd loosen up.

In spring/early summer of 2012 began experiencing profound pins/needles/tingling/decreased sensation feeling to both hands upon waking up. Not related to circulation as moving hands and fingers around (to get blood flowing) did not help, seemed to me more like a nerve thing. Over time this progressed, to where I'd wake up in the night due to this strange tingling feeling to both hands....and then in mornings it could take 1.5 hours for the feeling to go away.

Last spring, started waking up urgently in the middle of the night with the most intense, excrutiating BURNING to the SIDE of my outer LEFT thigh, from about mid thigh to just above side of the knee. It felt like someone had poured boiling water on me. I would jump out of bed screaming, literally, assuming I could 'walk it off' the same way you can when you get a cramp in leg or foot while sleeping but no dice......walking did nothing. The burning would last 15 - 30 seconds, then stop.....then to the area of the burning that spot on my skin would feel strange.....sorta numb, less sensation. Did some reading, only thing I could come up with was Meralgia Paresthetica (lateral cutaneous nerve compression). Family Doc agreed this was likely it (as by that point I'd gained 40 lbs since going off work and obesity can cause that). Getting increasing pain to feet/ankles, right knee......long story short Family Doc suspected I had Fibromyalgia.

As the numbness/tingling to hands, and the horrid burning pain to thigh were concerning me along with increased stiffness to my ankles......I requested CT Scan of Head, and referral for EMG. I was concerned about having MS. CT Scan showed Negative for MS/Lesions (Done Oct 2012, I read report), EMG apparently showed only that I have Carpal Tunnel to both hands and that's all.

Doc started me on Gabapentin which was nasty stuff for me, so she switched me to Lyrica.

This past February, feet getting so bad, walking like a duck....ankles tender and stiff (no swelling). Have high arches, arch area extremely tender, if I'd been on my feet for more than 20 minutes I was just about in tears due to the pain. Bought expensive home foot massager, was too powerful to even use as underside of feet so tender. I went to see a Podiatrist who was rather useless, just wanted to sell me $550 orthotics. Said I had 'symptoms of Plantar Fasciitis" but didn't actually have it. Said I have very high arches, feet stiff, I walk on the outside of my feet, needed orthotics to provide better support. I ended up initiating Physiotherapy as I was desperate for some help/relief. Was going weekly for about 7 weeks. She confirmed I had very limited range of motion to feet and ankles, very tight and painful Achilles tendon, tight/tender hamstrings and iliotibial bands. She taught me stretches. She said she could feel "knots" in my Iliotibial bands (bands that run up the sides of the thigh). When she'd work on these areas I'd experience intense "itching" to the tender spots. She said that itching can also be a manifestation of pain (I'd never heard this before). At home I'd been having itching to the sides of my thighs, intermittently, for a long time. Drives me nuts. The area that's itchy is very tender and you scratch and scratch and scratch, it hurts to scratch because of the tenderness and the scratching only barely relieves the itch, for about 5 seconds. There is no skin rash. It's deep in my thighs. It's horrible. Seems to be worse when (TMI) sitting on the toilet for some reason.

I wear proper shoes w/ orthotics around the house, I got some night socks for people w/ Plantar Fasciitis (to keep toes/forefront of foot more flexed forward when sleeping), no help.

As first podiatrist a useless tool, family doc referred me to one in the city, saw him last week. Asked me who diagnosed me w/ Fibro, was it a Rheumatologist, told him no...my family doc. He told me that people w/ Fibro often have foot problems but due to my other symptoms he felt something else could be going on so he sent me for bloodwork (Rheumatoid Factor, which was negative a year ago but could still be positive....ANA and HLA-B27). Said once results back he would refer me to a Rheumatologist.

ALSO.....starting this past summer, have been dealing with unpredictable explosive diarrhea. Not usual for me at all. Basic testing done that ruled out Celiac, infection/parasites, etc). Family doc attributes it to "IBS" (irritable bowel syndrome).

And if that's not enough, starting around Oct/Nov 2012, began experiencing some bowel incontinence. It's like the diarrhea is so explosive and I seem to get no real notice, then have about 5-10 seconds to get to the toilet....but also it's like I just don't seem to have the "control" to hold it until I'm pants down and on the toilet. It's absolutely crazy, and humiliating! So to me, 2 separate issues....there's the diarrhea but there's also ?poor sphincter control.

Have been waiting since Jul 2012 to see a GI Specialist (that's when diarrhea started, and I was concerned by this sudden change in my bowels so I really just wanted a Colonscopy but here you have to see a specialist and HE decides what tests to send you for).............FINALLY have appt w/ GI guy on May 27, thank God.

I also have profound fatique. Recently had bloodwork to see if my iron is low or anemic, both fine. There are times each day that I simply MUST sleep, even if there are things I really want/have to do. If I'm out at an appointment, then maybe stop to get some groceries, I come home and I am exhausted and have to sleep a couple of hours.

I really do NOT want to undergo another CT Scan again (craploads of radiation, have had 2 now, once for Gallbladder) if I can help it. Just wondering if at the time of my CT Scan Oct 2012, if it's possible for there to be no evidence of lesions but a person still has MS? Would an MRI be helpful?

These symptoms: foot/ankle pain/stiffness (sometimes my body moves faster than my stiff feet and I've fallen!), burning to thigh, tingling/numbness to hands, fatigue, sudden stress urinary incontinence, sudden bowel incontinence..........they all seem to me like they could be MS. I'm certainly not looking to be diagnosed with MS but if I have it I'd like to know.

Does any of the above sound familiar to any of you who've been diagnosed w/ MS?

If I request further investigation for MS, I'm sure I'll be met with "Well your CT Scan of Head was negative" so what should my response to that be, that it's sometimes falsely negative?

Many thanks
Lisa in Canada

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.

_________________
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?"

dear Lisa,

you should discuss with your doctor the possibility for a feces transplantation...

it is not an MS that causes your gut to go wrong, it is your bad gut that causes the MS ..


see also general-discussion-f1/topic20297.html
and the last few pages of general-discussion-f1/topic15188-420.html


good luck.

Leo

welcome lisa, if you are interested in tackling your symptoms from a nutritional angle I can help.

general list of ailments clinically associated with magnesium deficit (includes anxiety, asthma, autoimmune, depression, fatigue, fibro, gut disorders, ms, muscle cramps, insulin resistance, hypothyroid)
general-discussion-f1/topic6121.html

if you can order a serum magnesium test and ensure your levels are above 0.95 mmol/L (normal range 0.70-1.10 mmol/L) you may find some relief. I have suffered diverse magnesium deficiency symptoms all while test results were within the normal range. careful magnesium supplementation resolved the issues.

I have plenty of other info and can link you up to relevant peer reviewed research if you are interested

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

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.

Hello CaliReader,

I very much appreciate your response.

I was wrong, it wasn't a CT Scan/Head I had --- it was an MRI (my memory sucks, too!). It was my MRI in Oct 2012 that was negative for lesions.

I wonder if, early in the stages of MS, if maybe lesions don't always show up on an MRI?

So was your MRI positive for lesions?

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.

The multifaceted and widespread pathology of magnesium deficiency
http://www.ncbi.nlm.nih.gov/pubmed/11425281
Even though Mg is by far the least abundant serum electrolyte, it is extremely important for the metabolism of Ca, K, P, Zn, Cu, Fe, Na, Pb, Cd, HCl, acetylcholine, and nitric oxide (NO), for many enzymes, for the intracellular homeostasis and for activation of thiamine and therefore, for a very wide gamut of crucial body functions. Unfortunately, Mg absorption and elimination depend on a very large number of variables, at least one of which often goes awry, leading to a Mg deficiency that can present with many signs and symptoms. Mg absorption requires plenty of Mg in the diet, Se, parathyroid hormone (PTH) and vitamins B6 and D. Furthermore, it is hindered by excess fat. On the other hand, Mg levels are decreased by excess ethanol, salt, phosphoric acid (sodas) and coffee intake, by profuse sweating, by intense, prolonged stress, by excessive menstruation and vaginal flux, by diuretics and other drugs and by certain parasites (pinworms). The very small probability that all the variables affecting Mg levels will behave favorably, results in a high probability of a gradually intensifying Mg deficiency. It is highly regrettable that the deficiency of such an inexpensive, low-toxicity nutrient result in diseases that cause incalculable suffering and expense throughout the world. The range of pathologies associated with Mg deficiency is staggering: hypertension (cardiovascular disease, kidney and liver damage, etc.), peroxynitrite damage (migraine, multiple sclerosis, glaucoma, Alzheimer's disease, etc.), recurrent bacterial infection due to low levels of nitric oxide in the cavities (sinuses, vagina, middle ear, lungs, throat, etc.), fungal infections due to a depressed immune system, thiamine deactivation (low gastric acid, behavioral disorders, etc.), premenstrual syndrome, Ca deficiency (osteoporosis, hypertension, mood swings, etc.), tooth cavities, hearing loss, diabetes type II, cramps, muscle weakness, impotence (lack of NO), aggression (lack of NO), fibromas, K deficiency (arrhythmia, hypertension, some forms of cancer), Fe accumulation, etc. Finally, because there are so many variables involved in the Mg metabolism, evaluating the effect of Mg in many diseases has frustrated many researchers who have simply tried supplementation with Mg, without undertaking the task of ensuring its absorption and preventing excessive elimination, rendering the study of Mg deficiency much more difficult than for most other nutrients.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

About the Misdiagnosis of Magnesium Deficiency
http://www.jacn.org/cgi/content/full/23/6/730S
"...In patients with Mg serum values lower than 0.9 mmol/l Mg, magnesium supplementation is recommended; for patients with values lower than 0.8 mmol/l, starting Mg supplementation is necessary. We recommend that a Mg serum value of 0.9 mmol/l Mg be considered as the lower reference limit, in evaluating symptoms or diseases suspected as being associated with Mg deficiency. In this case, Mg has to be used as a first choice therapy. When symptoms of the MDS are found, patients with serum values of less than 0.8 mmol/l Mg, or better 0.9 mmol/l Mg, ... [are not automatically] normomagnesemic.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Lisa – in your first post, you listed a history of Interstitial Cystitis, hypothyroidism (Hashimoto's?), and now suspect MS. You must know that these are all in the category of the approximately 100 "autoimmune" diseases. It is very common for a person diagnosed with one autoimmune disease to be diagnosed later with a second, and even a third. (Frankly, I think insulin may be a common thread for most of these "autoimmune" diseases.) This may reinforce your suspicion of MS.

You have done well with blood work, and although Hgb A1C is normal, there is no correlation with the insulin level (glucose levels can appear normal, while insulin can be high). I still urge you to request the fasting blood insulin test.

The vitamin D3 (more a hormone) level is important; I think the natural pathway through sunshine (10-15 min. per day between 10 AM and 2 PM) is preferential to taking supplements. Through the skin and sunshine, D3 sulfate is made; I don't believe there are any supplements offering this form. (Since insulin has been called a "master hormone," I think many hormones are affected by excess insulin.)

By the way, I don't have much faith in doing Kegel exercises. Once again, I think excess insulin (and resulting insulin resistance) affects the muscles, causing dysfunction and even loss of muscle tone (hypotonia). And, I do think you have correctly identified the "MS hug."

My initial insulin test returned a moderately elevated level of 12 UU/ML; no later test has been lower than 9. My doctor ordered testing to look for an insulinoma – none was found. My diet is virtually void of all carbohydrates – we can find no explanation for my insulin levels. My pancreas simply over produces, perhaps because of a diet since childhood that was TOO rich in carbohydrates. (By the way, you haven't had the BCG – Bacillus Calmette-Guérin – vaccine against tuberculosis, have you? A Harvard researcher, Dr. Denise Faustman, is finding that it can increase insulin production – possibly curing type I diabetes.)

As you can see, I am obsessed with insulin; is it any wonder I have the reputation here of "that insulin girl?"

_________________
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?"