Bounced around, doctor to doctor, new symptoms maybe MS?

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Bounced around, doctor to doctor, new symptoms maybe MS?

Postby diagnosisimpaired » Mon Dec 23, 2013 12:37 pm

Hi all, and thank you for accepting my membership here.

I have been experiencing symptoms of "something" brewing since my late teen years. I am now under the care of a fantastic rheumatologist who believes I have a connective tissue disorder that can't be identified through labs yet.

Since teen years I have had many muscle pains, including severe abdominal cramping, and fatigue... lots and lots of fatigue... I also had exercise induced asthma issues and exercise intolerance. In my early 20s, IBS diagnosed, along with hypothyroidism and tilt-table positive orthostatic hypotension/neurally mediated hypotension that often caused syncope(passing out). Fatigue persisted so much that I had to take multiple long naps during the work day. I also had spasms in my wrists/hands for months after taking up writing as a profession... doctors thought it was carpal tunnel then wrote it off as fibromyalgia.

I have lived with the above issues, plus anemia (very low ferritin levels), adult-diagnosed ADD (inattentive), and miscellaneous aches and pains since, and last year mysteriously had a summer of pleurisy (right sided rib pain that kept me in tears). At that time I also got a positive antinuclear antibody test, which lead me to the rheumatologist for possible help. Results were inconclusive though and the rheumy dismissed me as having possibly drug-induced lupus and fibromyalgia.

This year, things seem to have spead up. It started with lots of one-sided migraine-like headaches, which included brief trigeminal neuralgia... after reading I think these may be cluster headaches as they do seem to come in clusters and they often cause vision loss in one eye, nose running and ear pain. I developed a bizarre reaction after an iv iron infusion in May - which caused bilateral hand and foot burning sensations, itching, with no rash... this has since evolved into joint pains in all finger joints primarily and wrist. I have also this year had a lot more numbing in hands and feet, usually depending on holding them in a particular position (such as elbows bent to hold a book, this will cause both hands to numb). I soonafter got phlebitis in left calf, which aches still, and have noticed right sided chest pain - this is brand new - and often feels like a dull ache below my rib bone, but can become extremely sharp and feel like a heart-attack I can only imagine feels. Two weeks ago I started noticing an ice-cold numb sensation right above the outside of my right knee -- and at that same time I experienced sharp nerve pain in the tops of my feet. I also have lots of muscle spasms/cramping that seems to persist way longer than it should... right shoulder/neck area is often attacked with this pain, but it also happens in my groin and back.

I have seen doctors... so many doctors... and they seem to want to treat a symptom and then send me packing. My rheumatologist wants to prescribe plaquenil to treat me, and I will talk to him at my next appointment about that, and will also query whether any of my problems may be due to a possible MS diagnosis.

I have two aunts on my mother's side who have MS, but I don't know all that much about the course of their illnesses. My mom only says they had "mild" versions, but there is likely more to it.

I am sure to be forgetting to share lots about my situation but would love any feedback and advice from you. I did have an EMG test on my hands recently which came back good (ie no nerve damage), although the neurologist suggested that my arthritis may be contributing to swelling which is causing pressure on the nerves.

Thank you for reading and hope you're all enjoying your holidays!
~Jessica
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Re: Bounced around, doctor to doctor, new symptoms maybe MS?

Postby jimmylegs » Mon Dec 23, 2013 12:56 pm

hi Jessica welcome to the forum :)
have you been to a nutrition specialist at all? based on your symptoms I could recommend some essential nutrients you might consider looking into.
may I ask what you do to address the low ferritin? is there any known dietary reason for your low levels?
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Bounced around, doctor to doctor, new symptoms maybe MS?

Postby lyndacarol » Mon Dec 23, 2013 2:41 pm

diagnosisimpaired wrote:I have been experiencing symptoms of "something" brewing since my late teen years. I am now under the care of a fantastic rheumatologist who believes I have a connective tissue disorder that can't be identified through labs yet.

Since teen years I have had many muscle pains, including severe abdominal cramping, and fatigue... lots and lots of fatigue... I also had exercise induced asthma issues and exercise intolerance. In my early 20s, IBS diagnosed, along with hypothyroidism and tilt-table positive orthostatic hypotension/neurally mediated hypotension that often caused syncope(passing out). Fatigue persisted so much that I had to take multiple long naps during the work day. I also had spasms in my wrists/hands for months after taking up writing as a profession... doctors thought it was carpal tunnel then wrote it off as fibromyalgia.

I have lived with the above issues, plus anemia (very low ferritin levels), adult-diagnosed ADD (inattentive), and miscellaneous aches and pains since, and last year mysteriously had a summer of pleurisy (right sided rib pain that kept me in tears). At that time I also got a positive antinuclear antibody test, which lead me to the rheumatologist for possible help. Results were inconclusive though and the rheumy dismissed me as having possibly drug-induced lupus and fibromyalgia.

This year, things seem to have spead up. It started with lots of one-sided migraine-like headaches, which included brief trigeminal neuralgia... after reading I think these may be cluster headaches as they do seem to come in clusters and they often cause vision loss in one eye, nose running and ear pain. I developed a bizarre reaction after an iv iron infusion in May - which caused bilateral hand and foot burning sensations, itching, with no rash... this has since evolved into joint pains in all finger joints primarily and wrist. I have also this year had a lot more numbing in hands and feet, usually depending on holding them in a particular position (such as elbows bent to hold a book, this will cause both hands to numb). I soonafter got phlebitis in left calf, which aches still, and have noticed right sided chest pain - this is brand new - and often feels like a dull ache below my rib bone, but can become extremely sharp and feel like a heart-attack I can only imagine feels. Two weeks ago I started noticing an ice-cold numb sensation right above the outside of my right knee -- and at that same time I experienced sharp nerve pain in the tops of my feet. I also have lots of muscle spasms/cramping that seems to persist way longer than it should... right shoulder/neck area is often attacked with this pain, but it also happens in my groin and back.

I have seen doctors... so many doctors... and they seem to want to treat a symptom and then send me packing. My rheumatologist wants to prescribe plaquenil to treat me, and I will talk to him at my next appointment about that, and will also query whether any of my problems may be due to a possible MS diagnosis.

I have two aunts on my mother's side who have MS, but I don't know all that much about the course of their illnesses. My mom only says they had "mild" versions, but there is likely more to it.

I am sure to be forgetting to share lots about my situation but would love any feedback and advice from you. I did have an EMG test on my hands recently which came back good (ie no nerve damage), although the neurologist suggested that my arthritis may be contributing to swelling which is causing pressure on the nerves.

Thank you for reading and hope you're all enjoying your holidays!
~Jessica


Welcome to ThisIsMS, Jessica. We are glad that you found us. This is a group of individuals, each with our own unique experiences and ideas which we are willing to share. Since you said you "would love any feedback and advice," I feel free to offer my opinions.

My recent focus is on wheat/gluten sensitivity. You list your symptoms over the years (I have highlighted them above in your post) and, in my opinion, they match those of gluten sensitivity (or its extreme case of celiac disease) very closely. I would encourage you to watch the following videos; perhaps a "disease detective" – your GP/internist (or your "fantastic rheumatologist" if he is cooperative) – would order the testing for gluten sensitivity (or perhaps you have already been tested for this?)… Dr. Gary Kaplan notes that even if the lab results do not indicate celiac disease, a 6-week test of a 100% gluten-free diet may reveal gluten sensitivity.

On 12/2/2013 Dr. Amy Myers, M.D., spoke on gluten sensitivity: http://www.doctoroz.com/episode/gluten- ... t-epidemic

@4:00 Dr. Amy Myers, M.D., speaks on the newly-recognized warning signs of gluten sensitivity: headaches, migraines, inflammation causing brain fog, depression from nutrient deficiencies (zinc, iron, B vitamins, omega-3 fatty acids, vitamin D), joint pain & arthritis, and skin rashes.

@4:30 she says more than 18 million have been diagnosed with gluten sensitivity; suspects that 1 in 2 probably has gluten sensitivity

@5:00 mention of study in New England Journal of Medicine several years ago that linked gluten sensitivity to 55 diseases (I do not know specifically which 55 diseases were included.)

Recent study showed that 56% of people with migraines had gluten sensitivity; gluten-free diet resolved the migraine problem.


In part 2 of his seven-part presentation on celiac disease, Gary Kaplan, D.O.,described the 4 forms of the disease:
http://www.youtube.com/watch?v=chjDo_pL ... qHjwF7ktRo

At 0:30 in the video he says that the atypical/extraintestinal form includes minimal gastrointestinal symptoms AND may include:
iron deficiency/anemia
dermatitis herpetiformis
chronic fatigue
joint pain
infertility
neurologic symptoms (ataxia, neuropathies) – I'll just add: numbness/burning/pain in the hands and feet are called "peripheral neuropathy"
vitamin deficiencies
ADD
osteoporosis/osteopenia
autoimmune disorders – According to http://www.aarda.org IBS, hypothyroidism, lupus, fibromyalgia, some asthma are in the list of autoimmune diseases.
migraines

These are my thoughts – I have no medical background. 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?"
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Re: Bounced around, doctor to doctor, new symptoms maybe MS?

Postby diagnosisimpaired » Tue Dec 24, 2013 8:21 am

jimmylegs wrote:hi Jessica welcome to the forum :)
have you been to a nutrition specialist at all? based on your symptoms I could recommend some essential nutrients you might consider looking into.
may I ask what you do to address the low ferritin? is there any known dietary reason for your low levels?


Hi Jimmylegs,
I haven't recently seen anyone about diet. I am now gluten-free due to my thyroid issues and I believe it bothers my stomach. The low ferritin - no doctor has given me a reason for that - and I have had that one iron iv infusion in May that so far has kept my levels within range (last time it was in the 90s, where before the infusion it ranged from 7-19 or so for 3 years). I also have gastritis and duodenitis that may contribute to the low levels, but unsure. :confused:
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Re: Bounced around, doctor to doctor, new symptoms maybe MS?

Postby diagnosisimpaired » Tue Dec 24, 2013 8:28 am

lyndacarol wrote:
Welcome to ThisIsMS, Jessica. We are glad that you found us. This is a group of individuals, each with our own unique experiences and ideas which we are willing to share. Since you said you "would love any feedback and advice," I feel free to offer my opinions.

My recent focus is on wheat/gluten sensitivity. You list your symptoms over the years (I have highlighted them above in your post) and, in my opinion, they match those of gluten sensitivity (or its extreme case of celiac disease) very closely. I would encourage you to watch the following videos; perhaps a "disease detective" – your GP/internist (or your "fantastic rheumatologist" if he is cooperative) – would order the testing for gluten sensitivity (or perhaps you have already been tested for this?)… Dr. Gary Kaplan notes that even if the lab results do not indicate celiac disease, a 6-week test of a 100% gluten-free diet may reveal gluten sensitivity.

On 12/2/2013 Dr. Amy Myers, M.D., spoke on gluten sensitivity: http://www.doctoroz.com/episode/gluten- ... t-epidemic

@4:00 Dr. Amy Myers, M.D., speaks on the newly-recognized warning signs of gluten sensitivity: headaches, migraines, inflammation causing brain fog, depression from nutrient deficiencies (zinc, iron, B vitamins, omega-3 fatty acids, vitamin D), joint pain & arthritis, and skin rashes.

@4:30 she says more than 18 million have been diagnosed with gluten sensitivity; suspects that 1 in 2 probably has gluten sensitivity

@5:00 mention of study in New England Journal of Medicine several years ago that linked gluten sensitivity to 55 diseases (I do not know specifically which 55 diseases were included.)

Recent study showed that 56% of people with migraines had gluten sensitivity; gluten-free diet resolved the migraine problem.


In part 2 of his seven-part presentation on celiac disease, Gary Kaplan, D.O.,described the 4 forms of the disease:
http://www.youtube.com/watch?v=chjDo_pL ... qHjwF7ktRo

At 0:30 in the video he says that the atypical/extraintestinal form includes minimal gastrointestinal symptoms AND may include:
iron deficiency/anemia
dermatitis herpetiformis
chronic fatigue
joint pain
infertility
neurologic symptoms (ataxia, neuropathies) – I'll just add: numbness/burning/pain in the hands and feet are called "peripheral neuropathy"
vitamin deficiencies
ADD
osteoporosis/osteopenia
autoimmune disorders – According to http://www.aarda.org IBS, hypothyroidism, lupus, fibromyalgia, some asthma are in the list of autoimmune diseases.
migraines

These are my thoughts – I have no medical background. All the best to you.


Hi Lynda,
I actually have been gluten free now for the past 8 months or so. I've gone back and forth over the past three years between gluten free diet and regular, and found that when I am on gluten free then my stomach issues are somewhat lessened. The cramping pains don't happen as much. After being tested and biopsied as not having celiac, I went back on it for about a year, but returned to gluten free when my thyroid issues escalated last spring. I have hashimoto's thyroiditis and I have read somewhat on the connection that gluten has in that disease and decided to go back on the diet again. I am not 100% sure that I am not consuming gluten but I try my darndest :) I haven't gone so far as to eliminate all contact with it, though - I still make my sons meals and find myself handling gluten products a lot. I know some people even go through all their lotions and shampoos, etc, to make sure those are gluten free and I haven't done that yet.

Right this morning I am having a lot of heavy chest pain - smack dab in the middle of my ribcage, it seems. Not sure if I should run into primary, because seems whenever I do they just don't know what's wrong and tell me to see a specialist.
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Re: Bounced around, doctor to doctor, new symptoms maybe MS?

Postby lyndacarol » Tue Dec 24, 2013 10:10 am

diagnosisimpaired wrote:I actually have been gluten free now for the past 8 months or so. I've gone back and forth over the past three years between gluten free diet and regular, and found that when I am on gluten free then my stomach issues are somewhat lessened. The cramping pains don't happen as much. After being tested and biopsied as not having celiac, I went back on it for about a year, but returned to gluten free when my thyroid issues escalated last spring. I have hashimoto's thyroiditis and I have read somewhat on the connection that gluten has in that disease and decided to go back on the diet again. I am not 100% sure that I am not consuming gluten but I try my darndest :) I haven't gone so far as to eliminate all contact with it, though - I still make my sons meals and find myself handling gluten products a lot. I know some people even go through all their lotions and shampoos, etc, to make sure those are gluten free and I haven't done that yet.

Right this morning I am having a lot of heavy chest pain - smack dab in the middle of my ribcage, it seems. Not sure if I should run into primary, because seems whenever I do they just don't know what's wrong and tell me to see a specialist.


Hi Jessica,
I commend you for being gluten-free for the past eight months; I have only just started down this path – about six weeks. With symptoms firmly entrenched, I think it will take a good long time on a gluten-free diet. I seem to recall hearing someone estimate it could take up to two years to reverse symptoms.

Some of us may be more sensitive than others. It is ubiquitous – EVERYWHERE! Some people may need to go through lotions and shampoos; I haven't done that yet either. But, apparently, gluten is found in toothpaste, charcoal, drug fillers, soups, gravy, teabags – areas more likely to get into our digestion.

As for your last comment about being told to see a specialist... I read an article that summed up my thoughts on this well: "doctors are experts in, and only test for, those parts of the body in which they specialize." When we have a symptom of unknown origin, we need an unbiased medical professional! I wish I had the answer for your heavy chest pain; sometimes it calms my fears just to tell my symptoms to someone who is supposed to be an expert, even if they can't help. You are not alone.
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Re: Bounced around, doctor to doctor, new symptoms maybe MS?

Postby diagnosisimpaired » Tue Dec 24, 2013 1:06 pm

Thank you Lynda. I agree it is difficult to maintain gluten-free and be faithful... When my family is eating pizza... real pizza... and I throw in a gluten free version lol it's just not the same. :lol:

Plus it is everywhere. Probably even in our water at this point lol.

I am committed to it for now though, as it may help save my thyroid gland from pooping out on itself too early. Apparently the gluten molecule can be mistaken for the thyroid gland, and when you ingest gluten and have autoimmune thyroid disease, it activates those antibodies to attack the thyroid gland... since my thyroid levels are all over the place this year I wanted to try and give them a break.

I'm going to bookmark those youtube links you gave me and watch them tomorrow when I have a lull in party activity. Thank you for sharing!
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Re: Bounced around, doctor to doctor, new symptoms maybe MS?

Postby jimmylegs » Wed Dec 25, 2013 7:06 am

hi again d.i. :) glad to hear your ferritin is up to 90, that's a great level. did they balance your iron supplements with zinc? zinc and iron need to be balanced, and supplementing only iron drives zinc levels down. zinc levels tend to be lower in the normal range for ms patients, higher in the normal range for healthy controls. something to consider. zinc status also is linked to utilization of magnesium (another nutrient that is lower normal in ms patients, higher normal in healthy controls) and based on your symptoms I'd be pretty interested to see your magnesium level. I suspect it could use a boost! zinc and magnesium problems are widespread in the population. gluten free diets help reduce depletion of these essential nutrients, but they don't do much to restore your body's stores. focusing on zinc-dense and magnesium-dense food helps, and short term, carefully sourced high-dose supplements can help too, in addition to avoiding mineral-depleting foods and beverages.
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Bounced around, doctor to doctor, new symptoms maybe MS?

Postby diagnosisimpaired » Wed Dec 25, 2013 11:16 am

jimmylegs wrote:hi again d.i. :) glad to hear your ferritin is up to 90, that's a great level. did they balance your iron supplements with zinc? zinc and iron need to be balanced, and supplementing only iron drives zinc levels down. zinc levels tend to be lower in the normal range for ms patients, higher in the normal range for healthy controls. something to consider. zinc status also is linked to utilization of magnesium (another nutrient that is lower normal in ms patients, higher normal in healthy controls) and based on your symptoms I'd be pretty interested to see your magnesium level. I suspect it could use a boost! zinc and magnesium problems are widespread in the population. gluten free diets help reduce depletion of these essential nutrients, but they don't do much to restore your body's stores. focusing on zinc-dense and magnesium-dense food helps, and short term, carefully sourced high-dose supplements can help too, in addition to avoiding mineral-depleting foods and beverages.


That is interesting about the zinc levels. The hematologist suggested only Vitamin C and folic acid, which I honestly take rarely. After hearing some on magnesium last year, I have supplemented off and on with magnesium citrate.I try epsom salt diluted in water in a spray for daily magnesium, and occasionally an oral supplement (magnesium citrate with calcium I believe). I am going to read up on the zinc connection and probably find a good supplement to add into the mix. Thanks for that info jimmylegs!
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Re: Bounced around, doctor to doctor, new symptoms maybe MS?

Postby jimmylegs » Wed Dec 25, 2013 4:00 pm

hey there :) no problem. a bit more detail:

I suspect the hematologist may have been focused exclusively on the iron side of things.. vit C would certainly help with iron absorption. but again that could be at the expense of zinc. funnily enough, ensuring good zinc status improves folic acid utilization as well. (if you were to get a serum zinc test, you'd want your serum level to be up at the top of the normal range, eg close to 18 umol/L).

if you can, when shopping for a therapeutic zinc supplement find one that is balanced with copper, eg 50mg zinc citrate with 2mg copper. (fyi, a desirable *serum* zinc copper ratio is 1.1:1. a good serum copper level would therefore be around 17.5 umol/L).

and then of course you need to make sure that just supplementing zinc doesn't affect your iron status. the vit C would of course assist the iron absorption. such a balancing act!

the mag citrate and the topical mag sulfate (Epsom salts) that you have been using sound like a good start. daily intake of 400mg is a baseline maintenance requirement. if your food plus supplemental regimen is not supplying you with close to 400mg daily intake, (verified with serum test results close to the top end of the normal range, ie 1.1 mmol/L), then it may help to increase your daily mag citrate intake. when symptomatic for issues that are consistent with magnesium depletion, you could consider boosting your daily intake to 600-700mg daily. if you can find magnesium glycinate, you'll be able to absorb a higher percentage of elemental magnesium from each pill.

I don't know how you feel about shellfish. but oysters and clams are rich natural sources of zinc and iron. oysters lean to the zinc side but do contain iron. oysters also deliver magnesium for good measure! clams lean to the iron side, but also provide zinc.
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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