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I am 29 year old female, married to the most wonderful and caring husband. For the last seven years, I had been struggling with tremors and involuntary movements "seizure" that now have progressed to be almost every day. When I was in my teens, I had a lot of emotional breakdowns that would involve much crying and unorganized movements. I am not from the best background and suffer from major depression and general anxiety disorder. When I moved away from my hometown to Florida, I was determined to get help, and I have been. I have suffered from bowel issues for much of my life but they got worse to the point I was 90 pounds and 5 ft 6 in. In the end, the doctor said it was "all in my mind." In the meantime, the tremors and involuntary movements started to occur about once a month. They were not the emotional breakdowns I had in my teens. I would jerk only on my right side. I had to give up playing the viola because I lost fine motor movement in my right hand. I was able to keep the episodes in private because I was embarrassed. Only my husband and I knew about them. They would stop for several months and then they returned. In late 2011, the tremors and movements were so bad that I was losing consciousness. I would loose feeling in my toes and fingers. My right side always felt cold. I didn't know it was happening. I finally received health insurance through my employment and saw a neurologist. Months of test: blood, EEG, MRIs, but no spinal tap. My MRI was clear as well as my other tests. The neurologist said "It just sounds like stress. It is in your head." The only thing that was "interesting" was my AA? (something about autoimmune) was 80. I reported this to my PCP and other doctors. They said it was nothing.

In 2013, I went through medical hell. Two hospital stays: ovarian cysts in February and kidney infection in October. The kidney infection was surrounded by at least ten different bacteria infections that now I used the restroom once hour out of fear of another infection and my bladder always has to go. Once again, I loss a lot of weight. Two weeks after my hospital stay for the kidneys, I had a seizure at work, freaked my whole office out. They sent me to the ER. Once again, large amount of test including MRI. All normal. However, the ER doctor witnessed the tremors in my hand and leg. It feels like there is a million pounds hanging off my leg and foot was ice cold and on pins and needles. They did not know how to document the movements so they just said "seizures with no explanation." Now, the tremors and involuntary movements on my right side had become public. I cannot keep my hand still. I have stopped wearing my glasses because I see double almost all the time. I am in constant pain and massive headaches. I can sleep for 18 hours and wake feeling exhausted and fatigued. The muscle stiffness is the worst and the inability to use my right hand (writing hand) has caused me to start writing with my left hand. I started to forget words or how to speak. The ER doctor explained it as "expressive aphasia." I just mumble but can not pronounce a word or how I was feeling. You feel trapped in your body, waiting to express yourself but nothing comes out of your mouth...

On Monday, I had a "seizure" right outside of my doctor's appointment following an appointment for depression. They barely got me inside and witnessed the full episode. My PCP was in shock, disgusted that everyone said this was "just in my head." For the fact it is progressing in this round so badly, I am being referred to a neurological specialist focused in MS. After so many "normal" MRIs and tests and being told I was imagining everything, I am extremely scared it will happened again. In relation to what I know about MS, it does come in remission cycles. People have been suggesting it for awhile, since October. When it comes to coordination, I am accident prone. I am always falling over, running into walls, and covered in bruises from the accidents. I drop pens or anything in my hands. My husband carry glass or plates to avoid me dropping something. My co-workers are used to my bad typing (I am focusing very hard to not mess up on here) and randomly twitching or slurring when I speak. I have to take naps at work during my lunch break because I get so fatigued and worn out from the tremors and jerking. I fear I will lose my job for all the days off and the tremors and jerking. I had to stop my masters program because I missed too many classes and cannot think or concentrate to complete my degree. My husband is exhausted from helping through my episodes. The headaches, the double vision or blind spots in my right eye.... I am thankful I am alive, but I am not living.

I am reaching out to this forum because it has an "undiagnosed" section. I don't know if what I am experiencing is MS or something else. I just beg someone to please let help and don't say "It is all in your head."

it's not all in your head. all by itself, stress can cause physical, specifically measurable, treatable health problems.

do you have a copy of your medical files? have they done any nutrient tests? I can tell you for one thing that stress depletes essential magnesium regardless of whether the stress is physical or emotional. on top of that, most people don't consume the daily minimum magnesium intake. when your magnesium drops, you have suboptimal function of HUNDREDs of enzymes and who knows how many interactions that are needed for healthy functioning.

you can check through your files for a 'serum magnesium' result. if you can find one, you want your result to be very high normal - lots of sick people have low normal magnesium levels. healthy people have high normal magnesium, sometimes even higher than the top end of the normal range. docs are very likely to dismiss a normal result and mistakenly rule out magnesium deficits because the range is normal.

symptoms linked to poor magnesium status include muscle issues (eg cramps, spasms, tics, stiffness), emotional problems, anxiety, insomnia, poor circulation, pain, headaches, and fatigue. the list goes on.

zinc is another common nutrient issue. look for a serum zinc test in your files and again, make sure your level is very high normal.
zinc helps you absorb and utilize magnesium. poor zinc status can result in cognitive issues and increased susceptibility to infection.

nutrient problems are an enormous gap in medical training. I don't expect these tests to be included in your records. if they are not, you can certainly arrange to have these done. hope that helps!

Hi jimmylegs,

Thank you for your prompt reply. I actually have to take a lot of supplements with my regular medicines each morning. Fish oil, prenatal vitamins (I was trying to pregnant before the bacteria infections started), Vitamin D, Vitamin C, ginger root, cranberry pills, probiotics... I believed they did a vitamin and nutrient level test with the first neurologist and the ER visit blood work because they just did not know what was happening. I have never seen so many physicians and nurses go "uh...what IS that?!" Both rounds came out fine they say, except I was a little low on vitamin D, thus the supplement. I try to eat very healthy. I have family member who have celiac disease and other vitamin deficiencies, so I know of those possibilities. I appreciate your feedback and it is definitely something I will bring forward to the new special neurologist.

I am an epidemiology masters student. I agree there are major gaps in medical training and understanding. Heck, they are still finding new parts of the human body every year. Modern medical sciences is actually only 70-some years old (if looking at the advent of antibiotics. It would be about 120 years for germ theory). I read people's illnesses here, their fight and coping with MS, and it helps to know that I am not the only one who falls asleep at night scared and don't have a name for what is happening.

I forgot to mention before that for the last two months, I have had a sore throat, a little cough, but not a cold or flu. I can only eat soft foods and soups because it is difficult to swallow without vomiting...I love being thin, but not because of all this!

Thank you, thejeeperswife

hey there

i'm currently doing my masters too - on nutrition, who knew! in between posts here, I'm doing my readings on population intervention research for chronic disease prevention.

please do check your records for a serum magnesium test and a serum zinc test! and don't take normal for an answer

The underestimated problem of using serum magnesium measurements to exclude magnesium deficiency in adults;
a health warning is needed for "normal" results. (Ismail et al, 2010)
http://www.ncbi.nlm.nih.gov/pubmed/20170394

Welcome to ThisIsMS, thejeeperswife. I agree with jimmylegs: this is NOT all in your head!

First, you may not have MS at all, but there is always a possibility; it is an exclusionary diagnosis - made by ruling out other possibilities; there is no definitive test for MS. (Like you, my first MRI was clear; in fact, my first 3 MRIs were "normal." My first neurologist told me that I definitely did not have MS. The "experts" and their tests can be wrong.) BTW, lesions can result from many different conditions.

You have identified definite symptoms; you need a "disease detective;" if your neuro is unwilling to investigate and test further, I would suggest that you need someone else. If you are able to work with the first doctor (your PCP), start there and return to him with a written timeline/list of symptoms to discuss; together, plan your strategy; consider starting with these suggestions from the University of Chicago:

http://peripheralneuropathycenter.uchic ... ndex.shtml

Numbness (your "loss of feeling in toes and fingers")/tingling/pain in the extremities is called peripheral neuropathy.

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 (IMO, a "fasting blood insulin test" should also be conducted – this is NOT a glucose test.)
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease (Neurological symptoms are common in atypical CD. AND you do have family members with celiac disease.)
Lyme disease
HIV/AIDS
Hepatitis C and B

Welcome thejeeperswife.

I have heard of the "It's in your head." cop out before and I thought if I was ever told that, I would like to tell the Dr, "and it is not in your head. If you had more in you head, maybe you wouldn't use such a lame cop out line and, instead, would be working on coming up with some solutions instead of excuses."
By the way, I don't recommend using that line.

THX1138

thejeeperswife wrote:...suffer from major depression and general anxiety disorder. When I moved away from my hometown to Florida, I was determined to get help, and I have been. I have suffered from bowel issues for much of my life but they got worse to the point I was 90 pounds and 5 ft 6 in. In the end, the doctor said it was "all in my mind." In the meantime, the tremors and involuntary movements started to occur about once a month. They were not the emotional breakdowns I had in my teens. I would jerk only on my right side. I had to give up playing the viola because I lost fine motor movement in my right hand. I was able to keep the episodes in private because I was embarrassed. Only my husband and I knew about them. They would stop for several months and then they returned. In late 2011, the tremors and movements were so bad that I was losing consciousness. I would lose feeling in my toes and fingers. My right side always felt cold. I didn't know it was happening. I finally received health insurance through my employment and saw a neurologist. Months of test: blood, EEG, MRIs, but no spinal tap. My MRI was clear as well as my other tests. The neurologist said "It just sounds like stress. It is in your head." The only thing that was "interesting" was my AA? (something about autoimmune) was 80. I reported this to my PCP and other doctors. They said it was nothing.

In 2013, I went through medical hell. Two hospital stays: ovarian cysts in February and kidney infection in October. The kidney infection was surrounded by at least ten different bacteria infections that now I used the restroom once hour out of fear of another infection and my bladder always has to go. Once again, I loss a lot of weight. Two weeks after my hospital stay for the kidneys, I had a seizure at work, freaked my whole office out. They sent me to the ER. Once again, large amount of test including MRI. All normal. However, the ER doctor witnessed the tremors in my hand and leg. It feels like there is a million pounds hanging off my leg and foot was ice cold and on pins and needles. They did not know how to document the movements so they just said "seizures with no explanation." Now, the tremors and involuntary movements on my right side had become public. I cannot keep my hand still. I have stopped wearing my glasses because I see double almost all the time. I am in constant pain and massive headaches. I can sleep for 18 hours and wake feeling exhausted and fatigued. The muscle stiffness is the worst and the inability to use my right hand (writing hand) has caused me to start writing with my left hand. I started to forget words or how to speak. The ER doctor explained it as "expressive aphasia." I just mumble but can not pronounce a word or how I was feeling. You feel trapped in your body, waiting to express yourself but nothing comes out of your mouth...

On Monday, I had a "seizure" right outside of my doctor's appointment following an appointment for depression. They barely got me inside and witnessed the full episode. My PCP was in shock, disgusted that everyone said this was "just in my head." For the fact it is progressing in this round so badly, I am being referred to a neurological specialist focused in MS. After so many "normal" MRIs and tests and being told I was imagining everything, I am extremely scared it will happened again. In relation to what I know about MS, it does come in remission cycles. People have been suggesting it for awhile, since October. When it comes to coordination, I am accident prone. I am always falling over, running into walls, and covered in bruises from the accidents. I drop pens or anything in my hands. My husband carry glass or plates to avoid me dropping something. My co-workers are used to my bad typing (I am focusing very hard to not mess up on here) and randomly twitching or slurring when I speak. I have to take naps at work during my lunch break because I get so fatigued and worn out from the tremors and jerking. I fear I will lose my job for all the days off and the tremors and jerking. I had to stop my masters program because I missed too many classes and cannot think or concentrate to complete my degree. My husband is exhausted from helping through my episodes. The headaches, the double vision or blind spots in my right eye.... I am thankful I am alive, but I am not living.

I am reaching out to this forum because it has an "undiagnosed" section. I don't know if what I am experiencing is MS or something else. I just beg someone to please let help and don't say "It is all in your head."

With your symptoms and your family history of celiac disease, I think it would be worthwhile to test for CD.
(BTW, were your ovarian cysts in February ever described as endometriosis or endometrial cysts?)

Compare your symptoms to those listed below:



Dr. Gary Kaplan describes the four types of celiac disease: 1.Typical 2.Atypical or Extraintestinal 3.Silent 4.Latent

At 0:30 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)
vitamin deficiencies
ADD
osteoporosis/osteopenia
autoimmune disorders - list available at http://www.aarda.org/
migraines, headaches

Or compare your list of symptoms to this list from the University of Chicago Celiac Disease Center:

http://www.cureceliacdisease.org/wp-con ... mptoms.pdf
Symptoms of celiac disease may include one or more of the following:
Recurring abdominal bloating and pain
Chronic diarrhea/constipation
Vomiting
Liver and biliary tract disorders (“Transaminitis”, fatty liver, primary sclerosing cholangitis etc.)
Weight loss
Pale, foul-smelling stool
Iron-deficiency anemia that does not respond to iron therapy
Fatigue
Failure to thrive or short stature
Delayed puberty
Pain in the joints
Tingling numbness in the legs
Pale sores inside the mouth
A skin rash called dermatitis herpetiformis (DH)
Tooth discoloration or loss of enamel
Unexplained infertility, recurrent miscarriage
Osteopenia (mild) or osteoporosis (more serious bone density problem)
Peripheral Neuropathy
Psychiatric disorders such as anxiety, depression

All the best to you. Let us know how it goes.

JW, can I ask how long you have been trying to get pregnant?

fyi I know anecdotes aren't science, but all the same - here's a nice story
an old boss of mine was used to hearing me go on about nutrients, but pricked up her ears when I said the magic word 'fertility' one day.
I hadn't realized she was trying to get pregnant until she questioned me on it - i suggested she boost zinc and magnesium.
when she later announced her pregnancy, I asked her how long she had been trying without success (year and a half), and how long to success after she adjusted her nutrient regimen (6 weeks).
also: she had previously shaved her head and originally I had had no idea why. turned out her hair had been falling out in chunks. after fixing her nutrition, it all grew back in.
furthermore, she later asked me if anything in the regimen would have changed her general level of anxiousness and I said ABSOLUTELY the magnesium could have been influential. she commented how surprising it was that something she had assumed was her natural personality, was actually a nutrient imbalance.
I thought it was a neat story to have so many different happy endings

THX1138 wrote:Welcome thejeeperswife.

I have heard of the "It's in your head." cop out before and I thought if I was ever told that, I would like to tell the Dr, "and it is not in your head. If you had more in you head, maybe you wouldn't use such a lame cop out line and, instead, would be working on coming up with some solutions instead of excuses."
By the way, I don't recommend using that line.

THX1138

Hi THX1138,

You know, that does sound like a good line to use though... It really is a line for them to say "I have not idea what is wrong with you."

jimmylegs wrote:hey there

i'm currently doing my masters too - on nutrition, who knew! in between posts here, I'm doing my readings on population intervention research for chronic disease prevention.

please do check your records for a serum magnesium test and a serum zinc test! and don't take normal for an answer

The underestimated problem of using serum magnesium measurements to exclude magnesium deficiency in adults;
a health warning is needed for "normal" results. (Ismail et al, 2010)
http://www.ncbi.nlm.nih.gov/pubmed/20170394

Hi jimmylegs,

That is pretty cool. Have you work with any epidemiology/health promotion students or professionals on development of interventions and research studies? Many universities/colleges/etc. have on-going projects that would be great for you. My focus is more on Maternal and Infant Health, which includes the nutritional needs of mother and child during pregnancy and the development of disease and death in newborns. Good luck on your studies!

As I look back over the records I do have, I see nothing for serum magnesium. If (and they should) do another round of blood test on me, I will definitely request it.

thejeeperswife

jimmylegs wrote:JW, can I ask how long you have been trying to get pregnant?

fyi I know anecdotes aren't science, but all the same - here's a nice story
an old boss of mine was used to hearing me go on about nutrients, but pricked up her ears when I said the magic word 'fertility' one day.
I hadn't realized she was trying to get pregnant until she questioned me on it - i suggested she boost zinc and magnesium.
when she later announced her pregnancy, I asked her how long she had been trying without success (year and a half), and how long to success after she adjusted her nutrient regimen (6 weeks).
also: she had previously shaved her head and originally I had had no idea why. turned out her hair had been falling out in chunks. after fixing her nutrition, it all grew back in.
furthermore, she later asked me if anything in the regimen would have changed her general level of anxiousness and I said ABSOLUTELY the magnesium could have been influential. she commented how surprising it was that something she had assumed was her natural personality, was actually a nutrient imbalance.
I thought it was a neat story to have so many different happy endings

Hi Jimmylegs,

Sorry for the multiple posts. I don't mind the question. Actually, the more suggestions the better! My husband and I were trying for two and a half years. The ovarian cysts I had last year were on both ovaries and were due to the follicles not "bursting" to release the matured eggs. Apparently, my OBGYN said she has never seen that, only in IVF patients. My system seems to know how to work very well, just can't continue the process.

It is so eerie that you mentioned the shaving head and loss of hair. My hair was about two feet long of curls, but I was shedding like crazy (more than my cats). I finally had to cut it cropped on Tuesday because a) it was strangling me during my seizures or obstructing my head if in a bun and b) with the loss of feeling in my right hand, i couldn't style/manage it anymore. I miss my hair, but I had to do it. Now, I am really pushing for this nutrition test!

You all are amazing. I just want you to know...

thejeeperswife

lyndacarol wrote:
With your symptoms and your family history of celiac disease, I think it would be worthwhile to test for CD.
(BTW, were your ovarian cysts in February ever described as endometriosis or endometrial cysts?)

Compare your symptoms to those listed below:



Dr. Gary Kaplan describes the four types of celiac disease: 1.Typical 2.Atypical or Extraintestinal 3.Silent 4.Latent

At 0:30 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)
vitamin deficiencies
ADD
osteoporosis/osteopenia
autoimmune disorders - list available at http://www.aarda.org/
migraines, headaches

Or compare your list of symptoms to this list from the University of Chicago Celiac Disease Center:

http://www.cureceliacdisease.org/wp-con ... mptoms.pdf
Symptoms of celiac disease may include one or more of the following:
Recurring abdominal bloating and pain
Chronic diarrhea/constipation
Vomiting
Liver and biliary tract disorders (“Transaminitis”, fatty liver, primary sclerosing cholangitis etc.)
Weight loss
Pale, foul-smelling stool
Iron-deficiency anemia that does not respond to iron therapy
Fatigue
Failure to thrive or short stature
Delayed puberty
Pain in the joints
Tingling numbness in the legs
Pale sores inside the mouth
A skin rash called dermatitis herpetiformis (DH)
Tooth discoloration or loss of enamel
Unexplained infertility, recurrent miscarriage
Osteopenia (mild) or osteoporosis (more serious bone density problem)
Peripheral Neuropathy
Psychiatric disorders such as anxiety, depression

All the best to you. Let us know how it goes.

Hi lyndacarol,

I have been through the celiac testing and everything. They didn't see in scarring or issues, just the GI saying "adjust your diet" and you have severe IBS. I actually like eating gluten free, but I haven't see the change. I might have to re-follow up on that though, since that doctor was one of them who said "it is in your head." Makes me so angry...

hi again - I'm enrolled in a course right now that I hope will help build that side of my network.

your focus is so important! in the course of moderating this forum I have dealt with quite a few moms and mothers-to-be. along the way I've dug into a fair amount on nutritional issues for mothers and children - for example looking at serum levels of my favourite nutrients and incidence of various birth defects etc. also nutrient status linkages to miscarriage and so on. it's all fascinating stuff!

for serum magnesium, make sure you aim for the very top end of the normal for serum magnesium - 2.7mg/dL would be good
and don't neglect a serum zinc test - that's another one that needs to be in the very top end of the normal range - 120 ug/dL for that one. Prasad is a good researcher to check out on the zinc aspect. YOU know, not to take plain old 'normal' for an acceptable result!

EEEE I was just posting and the system flagged you latest update - ZINC TEST FOR YOU for sure!!

also. what serum ferritin level do you have on file, if I may ask? you can private message me results if you don't feel like sharing publicly.

also - celiacs are low in zinc and more, gluten free diets result in increased zinc status in both patients (significant) and controls (not significant - their levels were much higher to start with, and I'm not sure how gluten rich the CG diet was prior to starting GFD), but after 10 yrs patients on gluten free diets can still have poor nutrient status. removing gluten can help by removing one aspect of an unbalanced diet.. but it doesn't automatically make the rest of the diet perfect, by any means.

Hi jimmy legs,

Yeah, I love my studies. I miss them. If I can get over this, I can return and do more research. Keep going on yours! The world needs more people like you.

I looked at my blood tests and cannot find anything really. Frustrating. I keep searching and asking for records. I will let you know if I find anything.

Makes sense about the gluten free diet. I don't think people value the roll of nutrition in healthy living. I would love to see a nutritionist, but my insurance does not cover it. I study preventive health. However, health insurance rarely cover for preventive measures, only secondary and tertiary treatments. So many health problems could be avoided with education and understanding what the body needs.

On a side note, has anyone experience a lot of itching on the head (left side) or the urge to scratch where it tingles/burns/or is numb in the arms or legs. I cannot stop scratching. I know I don't have a rash or I was not exposed to anything allergy related, but I am going insane with it for the last two days!

heya! i'll keep up the studies for sure

make them give you a zinc test okay? I just spotted the IBS comment. with all the rest of it, a zinc test is certainly in order. oh and what is your serum ferritin like? that's on file, surely.

so this itch. weird question: is it a sort of phantom, unscratchable itch? or is it an easy to scratch surface itch?