This Is MS Multiple Sclerosis Knowledge & Support Community

Hello everyone. I'm in the process of (hopefully) getting some kind of diagnosis, if anyone wants to read this and offer thoughts on this situation that would be appreciated.

I'm a 27 yr old female, I have Graves Disease (dx at 14) and needed total thyroidectomy at 23. Aside from some parathyroid issues I've since been in pretty good health. I started having symptoms in December/January this year during a period in which my thyroxine dose had been badly adjusted. I was under-supplemented on my latest bloodworks and my doc altered my dose too heavily, which made me quite ill.

In early January I ended up in the ED with chest pain (like my chest was being tightly squeezed and I couldn't pull in enough air) and numbness that had spread from a spot on my back to the whole left side of my torso that evening. They did an ECG, an x-ray and bloodwork to rule out a heart attack and sent me home when they found nothing, and the pain had eased. The pain flared up again a few days later and I went back in, but again they found nothing. The numbness in my left side spread from my torso right down to my foot and remained that way for almost 2 months. I'm not sure 'numbness' is the right word but I don't know how else you could describe it. The whole side felt dead to the touch, like a limb that's gone to sleep. It also reacted differently to cold temperatures and objects; in cold air my skin felt like it was radiating heat and was incredibly painful when touched by something cold. Parts of that side would often burn uncomfortably while other parts felt freezing cold.

Mid January I developed a severe limp in my right leg. I first noticed a tight, stiff feeling in my right ankle that sometimes extended to my calf and within a few days I could no longer lift my right foot. The muscles in my thigh suddenly went so weak I could barely lift my leg at the hip either and my knee involuntarily locked and snapped backwards when I was trying to walk. Walking was exhausting and very difficult and the more tired I was, the worse the limp got. The weakness and stiffness in my leg and ankle improved on their own over the course of a few weeks and after about a month I could walk normally again, but ever since I've had atrocious balance and get dizzy very easily while walking. I can hardly walk in a straight line. I've had vertigo, tingling, pins and needles, buzzing and vibrating under my skin, itches and nocturia, spasms, headaches, tinnitus, pains in all sorts of places but especially my ribs which ache and feel tight.

Late February I hand another flare up of squeezing chest pain so bad it woke me up while I was sleeping and got me a referral to a cardiologist. He was sure before he even saw me that the problem was not cardiac related but did a stress ECG and an echo nonetheless. It was at the time of this episode that I noticed the half-numbness was subsiding, but as it did the left side of my face and neck started to feel tight and my feet started going numb. It started in my right foot then went to my left. Aside from numbness it also feels like the soles of my feet are tight and swollen, and like the parts of my feet and all my toes are being squeezed or pulled on. It is extremely uncomfortable and often painful, especially when I'm sitting or lying down. I had an appointment with my Endo lined up and took her in a list of everything that had been happening and she was of the opinion that it was very unlikely any of my symptoms aside from the GI problems and fatigue were thyroid related. I'm aware that thyroid issues can cause nerve problems and in bad cases nerve damage and had been told as much at the ED in January when I'd pressed them about the numbness, so that is how I had been dealing with these symptoms. I was told that I needed to wait until my thyroxine levels were stabilized before anyone would look at my symptoms. I've been stable months now and I am still getting these symptoms. A couple of weeks ago a huge patch on my left leg went numb and I got a similar burning/heat sensation in my right side torso and leg that I had had on the left in January and February, minus the numbness. The tightness in left side of my ribcage is extremely uncomfortable. The feeling is different depending on what position I'm in and tends to be worst when I'm standing. It feels like my ribs are being pulled inward.

Since being deemed stable in February, I've been tested for Diabetes (negative) and B12 (500) and finally in April got an appointment with a general physician. He did a neurological exam and ordered a battery of bloodwork and an MRI of my brain and whole spine. I have an appointment for the results this Thursday. I really don't know what to think and just feel exhausted, confused and drained at this stage.

I'm doing my best to look after myself, especially with my diet, I'm trying to eat the most nutrient dense diet that I can and it has been helping me feel a bit better at least. I take magnesium glycinate and iodine. i will be speaking to my endo/gen phys about vitamin D next time i see them, but I have not responded well to supplements in the past and have had a very bad reaction to calcitriol, so mostly I do my best to get sun during the day. Sorry for the rambling post, and thank's if you read it all. It's been a very difficult year so far, at this stage it'll be a relief to even just start having things ruled out.

hi what's your full daily regimen iima? which nutritional tests have been done altogether? wondering about selenium in addition to b12 and d3

Hi plathbees,

finally in April got an appointment with a general physician. He did a neurological exam and ordered a battery of bloodwork and an MRI of my brain and whole spine. I have an appointment for the results this Thursday.

I understand your concern and fear but have patience for the MRI results Thursday. Did your Physician give any indication how your Neurological exam was? Normal? Abnormal? Multiple Sclerosis has a diagnostic criteria (The Revised McDonald Criteria) and relies heavily on MRI evidence. If something shows up in the MRI that might indicate MS you will be referred to a Neurologist for more testing and evaluation. MS is one of exclusion, all other possible causes for a person's symptoms must be ruled out. By the way; I like your Physician, there aren't many that would order all the MRIs yours did --- that's awesome!

plathbees wrote:...if anyone wants to read this and offer thoughts on this situation that would be appreciated.

I'm a 27 yr old female, I have Graves Disease (dx at 14) and needed total thyroidectomy at 23. Aside from some parathyroid issues I've since been in pretty good health. I started having symptoms in December/January this year during a period in which my thyroxine dose had been badly adjusted. I was under-supplemented on my latest bloodworks and my doc altered my dose too heavily, which made me quite ill.

In early January I ended up in the ED with chest pain (like my chest was being tightly squeezed and I couldn't pull in enough air) and numbness that had spread from a spot on my back to the whole left side of my torso that evening. They did an ECG, an x-ray and bloodwork to rule out a heart attack and sent me home when they found nothing, and the pain had eased. The pain flared up again a few days later and I went back in, but again they found nothing. The numbness in my left side spread from my torso right down to my foot and remained that way for almost 2 months. I'm not sure 'numbness' is the right word but I don't know how else you could describe it. The whole side felt dead to the touch, like a limb that's gone to sleep. It also reacted differently to cold temperatures and objects; in cold air my skin felt like it was radiating heat and was incredibly painful when touched by something cold. Parts of that side would often burn uncomfortably while other parts felt freezing cold.

Mid January I developed a severe limp in my right leg. I first noticed a tight, stiff feeling in my right ankle that sometimes extended to my calf and within a few days I could no longer lift my right foot. The muscles in my thigh suddenly went so weak I could barely lift my leg at the hip either and my knee involuntarily locked and snapped backwards when I was trying to walk. Walking was exhausting and very difficult and the more tired I was, the worse the limp got. The weakness and stiffness in my leg and ankle improved on their own over the course of a few weeks and after about a month I could walk normally again, but ever since I've had atrocious balance and get dizzy very easily while walking. I can hardly walk in a straight line. I've had vertigo, tingling, pins and needles, buzzing and vibrating under my skin, itches and nocturia, spasms, headaches, tinnitus, pains in all sorts of places but especially my ribs which ache and feel tight.

Late February I hand another flare up of squeezing chest pain so bad it woke me up while I was sleeping and got me a referral to a cardiologist. He was sure before he even saw me that the problem was not cardiac related but did a stress ECG and an echo nonetheless. It was at the time of this episode that I noticed the half-numbness was subsiding, but as it did the left side of my face and neck started to feel tight and my feet started going numb. It started in my right foot then went to my left. Aside from numbness it also feels like the soles of my feet are tight and swollen, and like the parts of my feet and all my toes are being squeezed or pulled on. It is extremely uncomfortable and often painful, especially when I'm sitting or lying down. I had an appointment with my Endo lined up and took her in a list of everything that had been happening and she was of the opinion that it was very unlikely any of my symptoms aside from the GI problems and fatigue were thyroid related. I'm aware that thyroid issues can cause nerve problems and in bad cases nerve damage and had been told as much at the ED in January when I'd pressed them about the numbness, so that is how I had been dealing with these symptoms. I was told that I needed to wait until my thyroxine levels were stabilized before anyone would look at my symptoms. I've been stable months now and I am still getting these symptoms. A couple of weeks ago a huge patch on my left leg went numb and I got a similar burning/heat sensation in my right side torso and leg that I had had on the left in January and February, minus the numbness. The tightness in left side of my ribcage is extremely uncomfortable. The feeling is different depending on what position I'm in and tends to be worst when I'm standing. It feels like my ribs are being pulled inward.

Since being deemed stable in February, I've been tested for Diabetes (negative) and B12 (500) and finally in April got an appointment with a general physician. He did a neurological exam and ordered a battery of bloodwork and an MRI of my brain and whole spine. I have an appointment for the results this Thursday. I really don't know what to think and just feel exhausted, confused and drained at this stage.

I'm doing my best to look after myself, especially with my diet, I'm trying to eat the most nutrient dense diet that I can and it has been helping me feel a bit better at least. I take magnesium glycinate and iodine. i will be speaking to my endo/gen phys about vitamin D next time i see them, but I have not responded well to supplements in the past and have had a very bad reaction to calcitriol, so mostly I do my best to get sun during the day. Sorry for the rambling post, and thank's if you read it all. It's been a very difficult year so far, at this stage it'll be a relief to even just start having things ruled out.

Welcome to ThisIsMS, plathbees.

In view of your thyroid problems, I hope you are aware of the following:

Symptoms of Vitamin D3 Deficiency (7 min. video)


Curtain #1: Skin Dry skin is the most common symptom of vitamin D3 deficiency. It is mostly caused due to the lack of antioxidants.

Curtain #2: Skin Vitamin D3 plays an important role in preventing premature aging. It makes your skin supple. Vitamin D3 creams are often prescribed to treat skin problems like psoriasis and acne.

Curtain #3: Thyroid Gland Vitamin D3 is crucial for the proper functioning of the thyroid gland. So, vitamin D3 deficiency symptoms are also related to the function of the thyroid gland.

Curtain #4: Thyroid Gland The presence of vitamin D3 in the cell is vital for the thyroid hormone to affect the cell. Even the treatments for thyroid using herbs, progesterone or raising T3 levels requires the right amount of vitamin D3 to be effective.

Curtain #5: Neurological Symptoms Men and women usually suffer from neurologic symptoms of vitamin D3 deficiency. Vitamin D3 helps control relaxation of skeletal and involuntary muscles. Deficiency symptoms include cramping and constriction of blood vessels.

Curtain #6: Neurological Symptoms This results in an increase in blood pressure, thus increasing the likelihood of migraines and headaches.

Curtain #7: Neurological Symptoms The presence of vitamin D3 in the cell is vital for the thyroid hormone to affect the cell. Even the treatments for thyroid using herbs, progesterone or raising T3 levels requires the right amount of vitamin D3 to be effective.

Curtain #8: Rickets As stated earlier, vitamin D3 plays an important role in bone health by facilitating calcium absorption.

Curtain #9: Rickets Thus, the bone disease rickets is the most prominent symptom of vitamin D3 deficiency. It is mainly caused due to the inability of the body to bind and absorb calcium and phosphate.

Curtain #10 Rickets This can be attributed to inadequate levels of vitamin D3 in the body.

Curtain #11 Cognitive Difficulties Vitamin D3 is also vital for archive our cognition. One study has indicated that people deficient in vitamin D3 have poorer mental function.

Curtain #12 Cognitive Difficulties Those, older adults need greater amounts of this vitamin D3 through supplementation.

Since vitamin D is required by every system in the body in order for that system to function properly, any or all of your symptoms (cardiovascular system, GI system, immune system, nervous system, muscular system, and more) can be related to vitamin D deficiency. The only way to know if you have a deficiency is to test for it.

If you have not had the vitamin D blood test called "25-hydroxy D" in the battery of bloodwork ordered recently, please ask the doctor you see next week to order one for you. (If your GP is reluctant to order one, ask your Endo. ANY doctor can order it for you.) Also, request your own copy of the test results so that you have the actual number.

Good for you for trying to get some sun during the day. But if you do have a deficiency, limited sun exposure may not be adequate to correct it; you may have to discuss the issue of supplements with your doctor. (Food sources of vitamin D are VERY limited – even the fortified foods. Wild-caught fatty fish is a good source. The vitamin D3 form of supplement is more effective than D2. Calcidiol is the storage form of vitamin D in our blood stream, not calcitriol, which is the active form.)

I think the possibility of vitamin D deficiency needs to be ruled out first.

plathbees wrote:I'm a 27 yr old female, I have Graves Disease (dx at 14) and needed total thyroidectomy at 23. Aside from some parathyroid issues I've since been in pretty good health.

Of course, there can be primary parathyroidism, simply a problem that develops in one of the 4 parathyroid glands.

But please be aware that a vitamin D deficiency can result in high parathyroid hormone (PTH) levels; and that vitamin D suppresses parathyroid hormone. There is definitely an inverse relationship between vitamin D and PTH.

In my opinion, this is one more good reason to request a vitamin D blood test.

I saw my Endo today and got my Vit D (it was the 25 hydroxy test) results. I was at 65 at the time of the blood test which was about a month ago now, so I have been at the lower end of the normal range, and this is over summer so I've probably been anywhere from 10 to 30 points lower over winter. The last time my Vit D was tested was back in 2011 when I was very hyperthyroid, and I was mildly deficient at that time. She gave me 50,000IU in a liquid supplement while I was there and for now i'll continue taking 30,000IU monthly and have my levels checked again.

My regimen is pretty simple (not much of a regimen really). I misspoke before, the magnesium supplement I currently have is the Fibroplex Plus supplement which is a biglycinate and it also contains selenium, B vitamins and some calcium. My selenium hasn't been tested but B12 was at 500. Calcium and phosphate are both completely stable, I've only had one blood test since the immediate aftermath of the thyroidectomy that showed I had marginally low blood calcium levels, that was last August. Apart from that I just take 280 mcg Iodine daily, and Caltrate a few times a week. I've been a lot more focused on diet, mainly due to the GI issues; I cut wheat and most other grains out and stick mostly to vegetables, fruit, seafood and pastured meat & eggs (as much as I can afford to >.>), with some dairy and fermented foods and other bits and pieces thrown in. In terms of exercise I just do yoga & stretches at home, and I don't drive so I walk everywhere.

Snoopy wrote: I understand your concern and fear but have patience for the MRI results Thursday. Did your Physician give any indication how your Neurological exam was? Normal? Abnormal? Multiple Sclerosis has a diagnostic criteria (The Revised McDonald Criteria) and relies heavily on MRI evidence. If something shows up in the MRI that might indicate MS you will be referred to a Neurologist for more testing and evaluation. MS is one of exclusion, all other possible causes for a person's symptoms must be ruled out. By the way; I like your Physician, there aren't many that would order all the MRIs yours did --- that's awesome!

He didn't give any indication either way, he was very reserved while conducting exam (he looked very concerned but that might just be how he is), and the only things I know were not normal were the balance test(?) and the part with the tuning fork; there were places I had significantly reduced sensation and in parts of my feet I couldn't feel the vibrations at all and could not feel when he was positioning my toes. When he had me stand upright and close my eyes I completely lost my balance, and also almost fell over when he had me walk heal to toe. And yes, he was very good! Aside from the exam, the fact that I have significant family history, one of my cousins has MS and I have an uncle with Sarcoidosis, probably also factored in.

Edit: I just remembered, I think I may have had abnormal plantar reflexes as well. My toes were extending when they are meant to flex?

hi is this the right info per your fibroplex supplement?


Ingredient.........................................Amount
L-Malic acid.......................................300 mg
Magnesium (magnesium bisglycinate)......75 mg
Thiamin (thiamin mononitrate)...............25 mg
Vitamin B6 (pyridoxine HCl)...................25 mg
Manganese (manganese citrate).............2.5 mg
Recommended Dose:
Adults take 1 tablet three times daily or as directed by your healthcare practitioner.
Take a few hours before or after taking other medications.

if so to your eye does the label allow us to assume that's all mg per single tablet, and therefore with 3 taken per day you are getting 225mg of elemental magnesium delivered via mag bisglycinate? (plus that in food and fluids)

65 is pretty low, assuming that is in nmol/l i personally aim for 125-150 neighbourhood myself - but would only suggest anyone else try for say 100 to start (>100 being associated with lower risk of ms so a reasonable step 1) without making sure a few other things were behaving themselves along the way

plathbees wrote:I saw my Endo today and got my Vit D (it was the 25 hydroxy test) results. I was at 65 at the time of the blood test which was about a month ago now, so I have been at the lower end of the normal range, and this is over summer so I've probably been anywhere from 10 to 30 points lower over winter. The last time my Vit D was tested was back in 2011 when I was very hyperthyroid, and I was mildly deficient at that time. She gave me 50,000IU in a liquid supplement while I was there and for now i'll continue taking 30,000IU monthly and have my levels checked again.

You are correct: a Vit D level of 65 (nmol/L, which I assume was the unit of measurement) – equivalent to 26 ng/mL, frankly deficient here in the US – is quite low, especially over summer. Your level must have been VERY low at the end of winter. It is good that your Endo has set about to address a deficiency and that she will check your levels again after about 6 months of supplementation.

I encourage you to read the following information and consider discussing with her the interval for your vitamin D doses – daily appears to be better than monthly:

Evaluation of vitamin D3 intakes up to 15,000 international units/day and serum 25-hydroxyvitamin D concentrations up to 300 nmol/L on calcium metabolism in a community setting
S.M. Kimball, N. Mirhosseini & M.F. Holick
Dermato-Endocrinology
April 13, 2017
http://www.tandfonline.com/doi/full/10. ... 17.1300213

Abstract
Supplementation by the general public with vitamin D at doses above the Tolerable Upper Level of Intake (UL) is becoming quite common. The objective of the current analysis was to characterize the effect of vitamin D supplementation at doses up to 15,000 IU/d in a community-based program on vitamin D status, calcium homeostasis as well as on kidney, liver and immune function. We evaluated data collected for 3,882 participants in a community program for whom there were blood measurements at program entry and at follow-up within 6–18 months between 2013 and 2015. Participants were supplemented with a wide range of vitamin D doses (1,000 – 15,000 IU/d) aimed at achieving serum 25-hydroxyvitamin D [25(OH)D] levels of at least 100 nmol/L. Serum 25(OH)D concentrations up to 300 nmol/L were achieved without perturbation of calcium homeostasis or incidence of toxicity. Hypercalcemia and hypercalciuria were not related to an increase in 25(OH)D concentrations nor vitamin D dose. To achieve serum 25(OH)D levels >100 nmol/L on average, required vitamin D intakes of 6,000 IU/d for normal Body Mass Index (BMI), 7,000 IU/d for overweight and 8,000 IU/d for obese. Doses of vitamin D in excess of 6,000 IU/d were required to achieve serum 25(OH)D concentrations above 100 nmol/L, especially in individuals who were overweight or obese without any evidence of toxicity. Serum 25(OH)D concentrations up to 300 nmol/L were found to be safe.

Efficacy of different doses and time intervals of oral vitamin D supplementation with or without calcium in elderly nursing home residents. (2008)
http://www.ncbi.nlm.nih.gov/pubmed/17874029

Conclusion: Daily vitamin D was more effective than weekly and monthly administration was the least effective.


Vitamin D intake to attain a desired serum 25-hydroxyvitamin D concentration. (2008)
JF Aloia
http://www.ncbi.nlm.nih.gov/pubmed/18541590

Conclusions: Determination of the intake required to attain serum 25(OH)D concentrations >75 nmol/L must consider the wide variability in the dose-response curve and basal 25(OH)D concentrations.


And view this video:

Dr. Bruce Hollis – Vitamin D Dosing Interval (39 min.):


Sharon McDonnell, epidemiologist at GrassrootsHealth, introduces Bruce W. Hollis, PhD, Medical University of South Carolina, who speaks on the importance of daily vitamin D dosing and why our bodies need to maintain a steady amount of D3 to reduce the risk of many diseases like cancer.

@0:52 Hollis: I've personally thought about this for a long time, being involved in vitamin D biochemistry and clinical trials, and in reading the literature of how all this fits together.
@3:49 Slide explains pathway for Vitamin D and Tissue Homeostasis


@16:37 You can get away with weekly doses, monthly doses, and even quarterly doses, if you are looking at skeletal problems. But if you're looking at other problems, such as cancer suppression, immune function, we feel that these doses… Weekly dose, you know, you might get away with it, but in these other doses absolutely not – monthly doses, quarterly doses, yearly dose. If you really want to have physiologic equivalence for all these studies, you would want to do a daily dose.

From the paper by Dr. Bruce Hollis:
"The Role of the Parent Compound Vitamin D with Respect to Metabolism and Function: Why Clinical Dose Intervals Can Affect Clinical Outcomes" in the Journal of Clinical Endocrinology and Metabolism
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3849670/

Well, I just saw the Gen Phys for my MRI results and he said it is almost definitely multiple sclerosis. There are lesions on my cervical and thoracic spine and my ANA was at 680. It's not a solid diagnosis yet, he is getting me in to see a Neuro as soon as possible.
Needless to say I basically cried the entire walk home.

plathbees wrote:Well, I just saw the Gen Phys for my MRI results and he said it is almost definitely multiple sclerosis. There are lesions on my cervical and thoracic spine and my ANA was at 680. It's not a solid diagnosis yet, he is getting me in to see a Neuro as soon as possible.
Needless to say I basically cried the entire walk home.

Hang in there plathbees and see what the Neurologist has to say.

plathbees wrote:Needless to say I basically cried the entire walk home.

Hi Plathbees,
Keep on walking. Walk every day. Walk when it's easy and even when it's not. Walking helps produce endogenous neurotrophic brain growth factors (see The Brain's Way of Healing by Norman Doidge). With MS, we have to fight for the privilege of standing still. Give MS an inch and it will take the proverbial mile.

I saw the Neurologist today, and it is definitively multiple sclerosis, given that there is no evidence of either an infection or brain injury that could cause any of this. She went through the full report from the radiologist with me, which was a lot more colourful than the gen phys let on. Along with the multiple lesions on my spine there are multiple lesions in my brain, both old and new, which resemble the Dawson's Fingers pattern. She wants to get me on treatment within a few weeks and I'm being pre-screened for immunosuppressive therapies now which is a lot to take in. Guess it's time to move out of this subforum.

NHE & Snoopy, thank you for the encouragement, and I will definitely keep walking. I've not been taking it so much for granted since being unable to walk properly in January and February and having these weaknesses that come and go and make walking more difficult or painful. Lyndacarol, thank you for all the info as well, I will certainly be taking a daily supplement.

And jimmyslegs, the Fibroplex Plus sup I have right now is this one, I get about 300mg mag per dose: https://xeniq.com.au/product/metagenics ... ral-powder

Hi plathbees,

I am sorry you received the diagnosis of MS. I am a very strong believer and advocate for exercise. Spinal cord lesions tend to be more symptomatic than brain lesions and are well known for affecting mobility. When I received my diagnosis my Neurologist told me the best thing I could do is walk. I looked at him and he said, "I know it's hard to understand since you can hardly walk, but walking will help." He was right although it was a very frustrating, difficult, slow and tiring process.

I was younger than you when diagnosed (24) with symptoms that go back to childhood, currently diagnosed for 32 years. I had been married for 4 years when I was diagnosed. We went on to have 2 children ages 25 and 27 and have been married for 36 years. I am still mobile although I do use trekking poles for distance and stability. My exercise through the years have changed, I currently weight train with a 4 station weight machine, an Elliptical, and exercises learned in Physical Therapy(PT).

You will go through an emotional rollercoaster with a wide range of emotions. It's okay, it's just part of the grieving process and very common.