At wits end! Does this sound like it could be MS?

[Ouchie]

This is a list of symptoms I am going to give my doctor. I am seeing an internal med doctor next week. I am desperate. I can't figure out what is wrong with me. The leg pain is so bad that I am having difficulty seeing how I am going to deal with it. It should be noted that I have a high pain tolerance - I previously had two ruptured cervical disks and went for 2.5 years before going to the doctor. I know what nerve pain feels like and I am having major nerve pain in my leg and sometimes limited episodes in other places. Oh, I am 45. Leg pain started at about age 20 but has gotten much worse over the past 2 years, but especially the last year or so. I am now 45.

Thanks all.
Symptoms:
Left eye twitch x 5 to 7 weeks

Periodic decreased sensation in left side lip/cheek/ear - like coming off of novocain - sometimes very mild and can only notice it if I think about it or touch my lip or cheek. Sometimes more pronounced.

Head jerk to the right with no warning - usually single jerk with brief nerve pain.

blurred vision in left eye

Occasional dizzy spells

Ringing in ears - I am so used to it that I usually don't notice it until it stops

More frequent headaches

Mood swings - one day fine, the next day very low. Sometimes lows last 2 to 5 days. They are often associated with period.

Irregular periods - may have a period, stop for a few days and start again. May spot in between or have full period every couple of weeks. Last period started 3/7/14 (this is the longest I have gone without a period in several months.

Bilateral Carpal Tunnel Syndrome

Iron deficient but not anemic

Odd random nerve pains lasting 1 to 2 seconds. They feel like deep pin pricks. Sometimes they repeat in the same place off and on for a period of minutes.

Trouble thinking at times and putting thoughts into words

Increased difficulty understanding new material or processing written material with multiple large words strung together.

Logic and math doesn't seem as affected as written and verbal language

Organizational skills decreasing

Multitasking skills diminished - need to concentrate on one thing at a time or I get distracted.

I go to get or do something and forget what I got up to do.

Misplace things more frequently

Numb/decreased sensation/itchy spot on back at bra line for several years.

Gastrointestinal problems better since I have gone gluten-free. If I have gluten, I have problems with bloating, gas and cramping. Occasionally triggers increased frequency of bowel movements.

Increased self-doubt

Sugar and wheat both decrease ability to think clearly

Tired - especially after about 3 pm

More difficult to get moving and clear my head in the mornings.

Not sleeping well - likely due to leg pain and tingling.

Low back pain

Knee pain

Left leg tingling in thigh with occasional shooting nerve pain to the foot. Tingling/numbness seems to be positional when leg is straight. Movement does relieve this. It is worse when lying flat or standing. Relieved by sitting. If I move to my back while sleeping, I wake to searing, tearing pain in my thigh. Getting up and walking relieves this.

Bowel movement occasionally triggers nerve pain in groin, low back or thigh.

Seems as though I rely on my right leg more when rising from seated position.

Increased frequency in urination but no bladder infection.

Bladder doesn't usually empty fully.

Bladder leakage with sneezing, even after just recently having urinated.

Osteophytes on lumbar spine

More sensitive to temperature extremes

Hot at night although night sweats seem to be decreasing

increased armpit perspiration during the day - even when I am cold.

Sometimes wobbly when I stand and start to walk (infrequent)

Low sex drive.

I find simple mindless tasks comforting (knitting, fishing, repetitive task)

Lumbar and Thoracic Spine MRI shows nothing but a bulging disk at T1

Blood Calcium High, Serum alkaline Phosphatase high. Elevated white blood cell count. Other lab a little off but I can't remember what off hand.

Thanks. I need to figure out what is going on.

[jimmylegs]

hi there and welcome here are some ideas on your symptoms.

Left eye twitch x 5 to 7 weeks (possible magnesium issue)

Periodic decreased sensation in left side lip/cheek/ear - like coming off of novocain - sometimes very mild and can only notice it if I think about it or touch my lip or cheek. Sometimes more pronounced. (when i had intermittent numbness or weakness it was not in my face but was related to low b12)
Head jerk to the right with no warning - usually single jerk with brief nerve pain. (possible magnesium issue)

blurred vision in left eye (possible zinc issue)

Occasional dizzy spells (possible zinc issue)

Ringing in ears - I am so used to it that I usually don't notice it until it stops (possible zinc issue)

More frequent headaches (possible magnesium issue)

Mood swings - one day fine, the next day very low. Sometimes lows last 2 to 5 days. They are often associated with period. (likely magnesium issue)

Irregular periods - may have a period, stop for a few days and start again. May spot in between or have full period every couple of weeks. Last period started 3/7/14 (this is the longest I have gone without a period in several months. (i helped my friend get her period back by working on her nutritional status.. as i recall she needed iron b12 zinc and magnesium. i have her lab reports around here somewhere and will go check exactly what she needed)

Bilateral Carpal Tunnel Syndrome (possible b vitamin issue)

Iron deficient but not anemic (definite iron issue - act on this. may be linked to wheat consumption)

Odd random nerve pains lasting 1 to 2 seconds. They feel like deep pin pricks. Sometimes they repeat in the same place off and on for a period of minutes. (not sure which one in particular. i used to get these all the time when i had multiple deficiencies. no longer).

Trouble thinking at times and putting thoughts into words (possible zinc/b12 issue - before i fixed my various deficiencies, ginkgo biloba helped a lot with this, b/c it increases blood flow for better oxygen and nutrient delivery to starved tissues)

Increased difficulty understanding new material or processing written material with multiple large words strung together. (same as above)

Logic and math doesn't seem as affected as written and verbal language (ABSOLUTELY - you can get by in many ways, other things are crap)

Organizational skills decreasing (same as above)

Multitasking skills diminished - need to concentrate on one thing at a time or I get distracted. (this is all cognitive stuff, again consider zinc b12 etc)

I go to get or do something and forget what I got up to do. (more cognitive.. i was like this when at my most zinc deficient. i had already spent lots of time working on b12)

Misplace things more frequently (cognitive again, same as above)

Numb/decreased sensation/itchy spot on back at bra line for several years. (my sensory losses were classic b12 and did not involve a particular spot in my back - i have stocking and glove neuropathy)

Gastrointestinal problems better since I have gone gluten-free. If I have gluten, I have problems with bloating, gas and cramping. Occasionally triggers increased frequency of bowel movements. (i used to have the same problem, even after working hard on b vitamins and vit d3. when i figured out and fixed the zinc deficiency, my gut healed and i am now able to consume gluten without discomfort. gluten free diets allow you to absorb more nutrients from other foods. doing better on gluten free means nutrient status is a problem. zinc status is strongly affected by gluten and there are many links between zinc deficiency and diarrhea.)

Increased self-doubt (more cognitive/emotional - a magnesium link)

Sugar and wheat both decrease ability to think clearly (same as gluten issue above.. you need the nutrients in order to think)

Tired - especially after about 3 pm (consider iron status as well as magnesium - iron is important for oxygen delivery, magnesium is important for ATP (energy) delivery)

More difficult to get moving and clear my head in the mornings. (cognitive, see elsewhere above)

Not sleeping well - likely due to leg pain and tingling. (possible magnesium issue. any element that is needed for melatonin production etc)

Low back pain (possible magnesium and vitamin d3 issue)

Knee pain (possible vitamin d3 issue)

Left leg tingling in thigh with occasional shooting nerve pain to the foot. Tingling/numbness seems to be positional when leg is straight. Movement does relieve this. It is worse when lying flat or standing. Relieved by sitting. If I move to my back while sleeping, I wake to searing, tearing pain in my thigh. Getting up and walking relieves this. (not sure on this one)

Bowel movement occasionally triggers nerve pain in groin, low back or thigh. (not sure)

Seems as though I rely on my right leg more when rising from seated position. (weakness could be from a whole bunch of different things)

Increased frequency in urination but no bladder infection. (possible magnesium issue)

Bladder doesn't usually empty fully. (possible magnesium issue)

Bladder leakage with sneezing, even after just recently having urinated. (possibly related to the above)

Osteophytes on lumbar spine (i don't know what those are, sorry :S)

More sensitive to temperature extremes (in terms of muscle conductivity? i used to be worse for that when i had multiple deficiencies.)

Hot at night although night sweats seem to be decreasing (not sure)

increased armpit perspiration during the day - even when I am cold. (i get that from stress.. any anxiety connection there?)

Sometimes wobbly when I stand and start to walk (infrequent) (i was most wobbly when b12 deficient; i think vit e was part of the problem too)

Low sex drive. (probable zinc issue)

I find simple mindless tasks comforting (knitting, fishing, repetitive task) (probably related to cognitive issues)

Lumbar and Thoracic Spine MRI shows nothing but a bulging disk at T1 (could be a good thing - still time for preventive action? disks can bulge due to weakness from poor nutrient delivery - you need to be well hydrated for the disks to stay in good shape.. my neuro told me i had a 'ratty neck' for my age, been trying to treat it better since)

Blood Calcium High, Serum alkaline Phosphatase high. Elevated white blood cell count. Other lab a little off but I can't remember what off hand. (both those high means almost certain low serum magnesium. time to act on that one for sure).

what's your diet and lifestyle like? any reason to suspect your nutrient status could be too low to handle also eating bread or other zinc-inhibitors, iron-inhibitors, magnesium-inhibitors etc?

[lyndacarol]

Welcome to ThisIsMS, Ouchie.

MS is an exclusionary diagnosis. There are many conditions that share the same symptoms, which need to be ruled out first before MS can be diagnosed.

Compare your doctor's plan for investigation to the suggestions proposed by the University of Chicago:
http://peripheralneuropathycenter.uchic ... #bloodtest

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:
Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

Please note that Vitamin B12 is the first blood test in their list. You may find many of your symptoms mentioned in the following video: "Everything You Want Your Doctor to Know about Vitamin B12"



a 50-minute documentary from the filmmaker Elissa Leonard, featuring Sally Pacholok, RN, BSN & her husband Jeffrey Stuart, D.O.; Lawrence Solomon, M.D., hematologist, Yale Medical School; Ralph Green, M.D., hematologist, UC Davis; Donald Jacobson, PhD, Cleveland Clinic

The U of Chicago also recommends testing for "Antibodies related to celiac disease." The less severe form (of gluten sensitivity) can also manifest in symptoms such as those you list.

In addition to the glucose testing recommended on the list of blood tests, I urge you to request your doctor to order a "fasting blood insulin test" – this is not the same as a glucose/blood sugar test used to diagnose diabetes.

All the blood tests are important; in my opinion, these would be a good place to start looking for cause to your symptoms.
All the best to you; please let us know how your appointment next week goes.

[Ouchie]

Thank you both for your replies. Back when I was having cervical pain before my surgery, I took Magnesium Maleate every day and that helped then. I will start taking it again, but hesitate to take it before going to the doctor next week. Then again, I have to try something to make the pain go away. Should I try vitamin and mineral supplements prior to seeing the Internal Medicine doctor or hold off for another week?

My B12 has always been good. But I will take a look at that video a little later today. My Hemoglobin runs fine but Ferritin runs around 40. Once upon a time I was diagnosed as Insulin resistance- my fasting insulin levels were high but glucose was normal. If this is just nutritional deficiencies - that would be wonderful - I can fix that.

I do not plan on being checked for celiacs because it is my understanding that I would need to be on a regular diet including gluten for at least 30 days. I do not want to go back on gluten.

As far as general health goes - I am a 45 year old woman who is overweight yet muscular. My wii fit says I am obese, the fact that I can see the musculature in my legs and arms tells me I am probably just a combination of fat and muscle. However, I would like to drop 30 to 50 pounds. It is hard to say how much I want to lose until I get there. I do not have a magic number in my head, I go more by how I look and feel. I carry my fat around the middle. I am active at times but not consistently. I like to kayak, camp. I have a bike I never ride (but plan to start today). I was going to the gym but because of the pain I have been having, did not want to go much for fear of hurting myself. I have been putting off this MRI on my back for months because of money. Now that I know I only have a bulging disk at t1, I will start going back to gym.

My diet consists of mean and veggies with probably too many potato chips. It is not like I binge on them, but I do have them sometimes. I try to stay away from sugar but it is hard. If I can detox from sugar about 3 days, then it becomes much easier to stay away from it. I would say I eat more meat and cheese than veggies and I need to change that.

[jimmylegs]

hi no problem

you could try to aim for 600mg of magnesium per day, mostly from diet, and top up using your magnesium supplement.
how much elemental mag is in each one of your mag malate pills?

i'd start working on changes right away, but do take that list to the doc. i would reorganize it a bit, eg have headings like 'cognitive' and 'muscular' and 'sensory' and then all your examples in a bullet list. if you think the doc will go for it, you could ask for a few tests eg serum zinc, serum magnesium. if you bring up that you are concerned about your other levels due to the low ferritin and high calcium and phosphorus, he might write you a requisition. if he does, do get your own copy of the results. no taking 'it's normal' for an answer - lab ranges are really messed up for zinc and mag in particular.

you could definitely stand to get that ferritin up closer to 80. could be useful to add some more vit C into your diet for absorption. papaya, red peppers, broccoli, strawberries, and brussels sprouts have more vit C per serving than oranges: http://www.whfoods.com/genpage.php?tnam ... #foodchart

re insulin resistance, there are strong links to zinc and magnesium there. also as far as celiac disease goes, research has shown that newly diagnosed celiac patients are low in both zinc and magnesium. related: http://www.thisisms.com/forum/undiagnos ... ml#p223508

if your diet is high in calcium that would likely have a negative impact on both zinc and magnesium status.

here are a couple of resources to check out

healthy magnesium-dense foods, with milligrams per serving (aim for 600 mg per day):
http://www.whfoods.com/genpage.php?tnam ... #foodchart

with the zinc chart you do have to really pay attention to the mgs per serving. go for 15mg per day from animal sources (more bioavailable) and beyond that you can try for another 25mg per day from veg sources (more difficult to absorb due to phytates and any excess calcium)
http://www.whfoods.com/genpage.php?tnam ... #foodchart

they don't have liver or oysters on the list, but each of those are rich in zinc and iron.

here's another useful tool to check your total daily food intake to see whether your diet is pro or anti inflammatory
http://inflammationfactor.com/look-up-if-ratings/

a negative score on a whole food like fruit or brown rice doesn't mean they are not nutritious - it means it is best to balance those foods against anti inflammatory foods such as fish and greens, which have a positive score. if you decide to try out that system, to maintain health you're supposed to have a daily score of at least +50 on the anti inflammatory side. when you're not well you can aim for at least +100. a salmon, sweet potato, and swiss chard meal gets you up close to +1000 in one shot!

good luck with the doc! and if you have any questions feel free to ask. additional info here: http://www.thisisms.com/forum/regimens- ... c2489.html

[Ouchie]

Thanks again. I suspect I have a really low calcium intake. I tend to be sensitive to dairy. I can take cheese and yogurt, but that is about it.

[jimmylegs]

all right in that case it would probably be smart to figure out daily dietary calcium, as well as daily mag:

healthy calcium foods: http://www.whfoods.com/genpage.php?tnam ... #foodchart

you want your calcium and mag intake to be roughly balanced. it's ok for calcium intake to be a bit higher, but not too much.

would also be smart to check whether your major dietary sources of calcium are pro- or anti-inflammatory, and work to make sure the balance is positive

[lyndacarol]

...Should I try vitamin and mineral supplements prior to seeing the Internal Medicine doctor or hold off for another week? I cannot see that it matters if you begin supplements immediately or wait another week, UNLESS your doctor is planning a blood draw and testing.

My B12 has always been good. But I will take a look at that video a little later today. My Hemoglobin runs fine but Ferritin runs around 40. Once upon a time I was diagnosed as Insulin resistance- my fasting insulin levels were high but glucose was normal. If this is just nutritional deficiencies - that would be wonderful - I can fix that.

I do not plan on being checked for celiacs because it is my understanding that I would need to be on a regular diet including gluten for at least 30 days – you are correct. I do not want to go back on gluten.

As far as general health goes - I am a 45 year old woman who is overweight yet muscular. My wii fit says I am obese, the fact that I can see the musculature in my legs and arms tells me I am probably just a combination of fat and muscle. However, I would like to drop 30 to 50 pounds. It is hard to say how much I want to lose until I get there. I do not have a magic number in my head, I go more by how I look and feel. I carry my fat around the middle (This is visceral fat.). I am active at times but not consistently. I like to kayak, camp. I have a bike I never ride (but plan to start today). I was going to the gym but because of the pain I have been having, did not want to go much for fear of hurting myself. I have been putting off this MRI on my back for months because of money. Now that I know I only have a bulging disk at t1, I will start going back to gym.

My diet consists of mean and veggies with probably too many potato chips. It is not like I binge on them, but I do have them sometimes. I try to stay away from sugar but it is hard. If I can detox from sugar about 3 days, then it becomes much easier to stay away from it. I would say I eat more meat and cheese than veggies and I need to change that. Meat and cheese are good sources of vitamin B 12. I see no need to change that. We could all probably stand to add more veggies.

As you will discover, each of us here at TIMS has his/her own unique ideas about MS. Mine revolve around insulin. (As I share my ideas, remember that I have no medical background.) The following sentence, however, is scientific fact (and you may have learned this already): Pregnancy is one of two times in life (Puberty is the other time.) when a woman is in an insulin resistant state (her body is producing increased insulin in order to develop and to put weight on the fetus). I suspect that the mother's body often does not revert to normal secretion immediately after delivery of the baby. In fact, I believe your pancreas produces excess insulin today since you say you were diagnosed as insulin resistant, tested with high insulin levels, and are overweight (Insulin is necessary to put on weight.).

Pregnancy is only one cause for excess insulin production (and, of course, cannot be the mechanism in men, children, virgins, or menopausal women). Diet (with its gluten, carbohydrates, artificial sweeteners, trans fats, MSG, BPA) can also trigger increased insulin levels - whole wheat bread and artificial sweeteners can do this more than common table sugar! Pancreatic infection/inflammation can also affect insulin levels. I believe this excess insulin (from one reason or another) is a strong player in my MS.

My suspicion is that Fatty Liver Disease (and visceral fat) is also involved in MS, 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 in MS interesting (http://www.terrywahls.com/).

Most recently, I am investigating vitamin B 12 and a possible deficiency also being involved in MS symptoms.

Until the "experts" find THE definitive answer to MS, we are all searching and investigating our own paths.

[Ouchie]

Everyone here is so helpful.

My latest update: I took a couple of 1000 Magnesium Maleate's (150 mg Magnesium) last night. This morning I took a bath using Epson Salt. My pain was not better last night but I believe it has been today. I got some more lab work back today. Hormone testing shows perimenepausal and I show as vitamin D deficient. Dr. started me on D 5000. We will see how tonight goes. So, for now, labs I know for sure are: Low D, High Serum Alkaline Phosphatase, Low Serum Bilirubin, High Serum Calcium, Low end normal Creatinine, High WBC, High Absollute Lymphocytes, Monocytes, and Granulocytes, High RCD, Low mean platelet volume, Previous ferritin of 40 and previous testing for high level of Insulin. Ferritin hasn't been tested in a year and Insulin hasn't been tested in about 4.

I will let everyone know what the Internal Med doctor says next week.

Thanks again.

Oh, I should add, I don't do sodas at all or artificial sweeteners. I use raw brown sugar.

[jimmylegs]

hi again no worries

you'll definitely need to keep up the mag, so that you can handle the vit d3.

be sure to take one of your magnesium malate pills at the same time as the 5000IU of vit d3, perhaps midday.
then try to get up to 500mg additional mag each day, from diet and supplements combined.

IMPORTANT: i would NOT recommend taking ANY supplemental calcium, given that you are now supplementing d3 with an already elevated serum calcium level.

i wonder if your dietary calcium really is that low, given the high serum calcium. you might be sensitive to dairy in part because of an already disturbed calcium-magnesium or calcium-zinc balance.

what's the mag malate like in terms of GI side effects? if you took a total of 3x150mg in a single day, would it give you the runs? if it would, then consider shopping around for magnesium glycinate.

how do you feel about oysters and clams? it's easier to absorb iron and zinc from food than it is from supplements. and you'll need zinc to help with magnesium and d3 utilization as well.

if you were able to get zinc and mag tests from the doc next week, that would be great info for you to have.

[Ouchie]

I saw the internal med doctor today. Somehow he didn't have my records and labs in his file even though I know they were faxed over and a confirmation was sent. I guess they are on someone's desk and haven't been filed yet.

Anyhow, without looking at history or labs, he looked at my list of complaints, talked to me a little and promptly told me that he thought my problems were psychosomatic. I checked with my GP - she disagrees. Meanwhile, I will just try supplements and see where it leads me. I have been on Magnesium about 2 weeks and D3 for 1 week. For the first time in a very long time, I have been able to sleep on my right side some. Nerve pain is still there but not as severe.

[jimmylegs]

heya as far as i can tell, 'it's all in your head' is docspeak for 'i don't know' ie it's not in their playbook. this is ok. it just means not every doc is ideally equipped to help going forward. some might help you get some info, but still may not be best equipped to interpret that info or provide advice on how to use it. at any rate, glad to hear the GP doesn't think your issues are psychosomatic. excellent to hear that you have had some slight relief with the pain. how's that eye twitch, any improvement?

are you still doing 150mg elemental mag from mag malate each day, plus 5000 IU of vit d3, plus an extra 450mg or so of magnesium from food and supplements at other times? at a minimum, while you work out dietary details i'd strongly recommend at least one other 150 mg mag malate pill at a separate time of day than when you take the d3/mag combo. hope you continue to see progress!

if you can add zinc to the routine, that should help address a few of your symptoms as well. if you can, find a zinc citrate 50mg blended with 2mg copper citrate (not cupric oxide).

[Ouchie]

Actually, my eye hasn't twitched in 3 days. Thanks for asking. I am taking 300 mg of elemental iron (2 150 pills) per day and trying to get some through diet. I am not tracking what I get through diet but will work on that. I am taking a d3 5000iu per day. I plan to hit the health food store today and get a different type of magnesium and some zinc.

Thanks for your help and advice.

[jimmylegs]

hey no probs

i'm guessing you meant to type magnesium where you mentioned iron above? do make sure you take half your mag *with* the d3, and half away.

hope you are able to find some magnesium glycinate and zinc/copper citrate going forward.

hope you continue to feel better