Symptoms beginning to worry me

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Symptoms beginning to worry me

Postby marbie » Mon Nov 10, 2014 9:05 am

Hi all, I just joined today to share...

I haven't been to my GP yet about symptoms as they are now. In the past I've been diagnosed with a "text-book" case of Mono in 2011 (when I was 26) and, more recently, general anxiety and ADD in 2012.

Since having mono, I never really felt the same, but for the past few months things have been getting worse. The symptoms I have include:

  • Extreme fatigue even after a good night's sleep
  • Excessive yawning, even when out hiking or something and not feeling tired
  • Heat intolerance!!! Get super sweaty, super fast and it takes me forever to cool down. Occasionally I will tremble, feel week, and a couple of times my vision has gone black (but never passed out). Last year around Christmas, I played laser tag and felt super overheated afterwards...went outside in the snow (I live in Maine) and a friend told me steam was rising from my head. On the other hand, it takes my feet and hands forever to warm up.
  • Terrible memory and concentration problems and when speaking, I often lose the simplest words like "stairs" or "door" and sometimes it takes me a long time to get out what I'm trying to say.
  • Balance seems off and clumsiness...walking into things, not doing things right, like my visual perception is off.
  • Couple of instances where I felt drunk...like a lag between eye/head movement and registering what I'm seeing.
  • History of swallowing problems. I have had food stuck in my throat more than once and had a couple of endoscopy visits (one emergency and was not sedated) and done the barium thing once. They never really found a problem.
  • Sudden coughing when warm in bed that doesn't go away until I get up and drink cold water.
  • In the last couple of months, my right arm as gotten the numb/tingly feeling like it has gone to sleep, even though I was just sitting. It lasted about an hour.
  • Muscles always tense, especially in legs, but also arms, shoulders, and jaw. I'll relax them once I realize they're tense, but then they go back to being tense.

I always just chalked all this up as anxiety, ADD, and never completely getting over mono, but lately I've been worrying it could be something like MS which led me here...I'm taking Citalopram for the anxiety and Vyvanse for the ADD. The Vyvanse has been amazing at taking some of the fatigue away and helping me get motivated to actually do things and not just sleep all day, but the fatigue is overcoming the meds and has made me think about my symptoms again.

Would love any thoughts or advice! I do plan on making a Dr. appt soon.
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Re: Symptoms beginning to worry me

Postby Youarethecure » Mon Nov 10, 2014 10:23 am

You need to see a doctor, that is your best bet.

A lot of those symptoms don't seem like MS at all while some do. It seems like you have some sort of infection maybe? Lyme disease maybe?

Also, mono could have left your systems ravaged and deficient in many key nutrients.

We can speculate till the end of time, when a doctor can probably give you an answer. Have you ever gone to a doctor to get tested for things?

Best of luck,

Chris
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Re: Symptoms beginning to worry me

Postby jimmylegs » Mon Nov 10, 2014 10:45 am

hi there :)

just as an fyi with intense nutrient therapy i was able to get a close family friend clear of a case of chronic mono, demonstrated by improvements in EBV bloodwork and objective symptoms before and after nutrient therapy. she had suffered with it for years before i was able to get actively involved. she had previously been looking into permanent disability, and in contrast is now working full time and looking to increase weekly hours with a part time job as well.

anxiety and ADD have plausible nutrition links as well.

i have experienced a lot of the symptoms you describe, the fatigue, anxiety, poor memory, spatial perception issues, swallowing issues, numbness/tingling, and muscle spasticity.

everything has resolved with nutrition therapy, with the exception of some persistent mild numbness in hands and feet.

curious if you are on any supplements? or is it mostly just the meds. loads of nutrition tips in these threads if you go looking :) pretty much anything by me for example lol jimmylegs-u2538-posts.html
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Symptoms beginning to worry me

Postby lyndacarol » Mon Nov 10, 2014 11:17 am

marbie wrote:I haven't been to my GP yet about symptoms as they are now. In the past I've been diagnosed with a "text-book" case of Mono in 2011 (when I was 26) and, more recently, general anxiety and ADD in 2012.

Since having mono, I never really felt the same, but for the past few months things have been getting worse. The symptoms I have include:

  • Extreme fatigue even after a good night's sleep
  • Excessive yawning, even when out hiking or something and not feeling tired
  • Heat intolerance!!! Get super sweaty, super fast and it takes me forever to cool down. Occasionally I will tremble, feel week, and a couple of times my vision has gone black (but never passed out). Last year around Christmas, I played laser tag and felt super overheated afterwards...went outside in the snow (I live in Maine) and a friend told me steam was rising from my head. On the other hand, it takes my feet and hands forever to warm up.
  • Terrible memory and concentration problems and when speaking, I often lose the simplest words like "stairs" or "door" and sometimes it takes me a long time to get out what I'm trying to say.
  • Balance seems off and clumsiness...walking into things, not doing things right, like my visual perception is off.
  • Couple of instances where I felt drunk...like a lag between eye/head movement and registering what I'm seeing.
  • History of swallowing problems. I have had food stuck in my throat more than once and had a couple of endoscopy visits (one emergency and was not sedated) and done the barium thing once. They never really found a problem.
  • Sudden coughing when warm in bed that doesn't go away until I get up and drink cold water.
  • In the last couple of months, my right arm as gotten the numb/tingly feeling like it has gone to sleep, even though I was just sitting. It lasted about an hour.
  • Muscles always tense, especially in legs, but also arms, shoulders, and jaw. I'll relax them once I realize they're tense, but then they go back to being tense.

I always just chalked all this up as anxiety, ADD, and never completely getting over mono, but lately I've been worrying it could be something like MS which led me here...I'm taking Citalopram for the anxiety and Vyvanse for the ADD. The Vyvanse has been amazing at taking some of the fatigue away and helping me get motivated to actually do things and not just sleep all day, but the fatigue is overcoming the meds and has made me think about my symptoms again.

Would love any thoughts or advice! I do plan on making a Dr. appt soon.

Hello and welcome to ThisIsMS, marbie.

I have no medical background, but here are my thoughts (as you invited in your last sentence):

Your symptoms (extreme fatigue, abnormal gait – unsteady movements, clumsiness, visual disturbances, mental impairment – mental confusion or forgetfulness, dysphasia a.k.a. "swallowing problems", numbness/tingling, anxiety) are consistent with a vitamin B12 deficiency. Any person at any age (even in the 20s) can develop a B12 deficiency. If this is the cause of your symptoms, a B12 deficiency is easily and inexpensively treated; if caught early, symptoms are usually reversible. I believe this should be the first condition ruled out in the investigation of symptoms like yours.

When you see your GP, I suggest that you discuss this possibility with him and request thorough initial testing for a possible vitamin B12 deficiency – this includes #1 a serum B12 test, #2 a serum folate test, #3 a serum homocysteine test, and #4 a serum or urinary methylmalonic acid test. A serum B12 test alone is not adequate to detect a B12 deficiency. Do not take B vitamin supplements before testing as this will skew test results. (By the way, I think it is a good idea to request your own copies of any test results – so you have the actual numbers.)

Also, I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Dr. Jeffrey J. Stuart, D.O. (This may be available at your library.): http://b12awareness.org/could-it-be-b12 ... diagnoses/
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Re: Symptoms beginning to worry me

Postby jimmylegs » Mon Nov 10, 2014 11:54 am

also.. as tempting as it can be to zero on one magic bullet.. given the extent of the research on nutrition for ms in particular and chronic illness in general, i personally would caution you against zeroing in on just b12. i get that it is in fashion here at TIMS right now, and certainly it is the most established best known longest term nutritional differential for ms, but it is FAR from being the only culprit in the mix.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Symptoms beginning to worry me

Postby lyndacarol » Mon Nov 10, 2014 12:40 pm

lyndacarol wrote:Hello and welcome to ThisIsMS, marbie.

I have no medical background, but here are my thoughts (as you invited in your last sentence):

Your symptoms (extreme fatigue, abnormal gait – unsteady movements, clumsiness, visual disturbances, mental impairment – mental confusion or forgetfulness, dysphasia a.k.a. "swallowing problems", numbness/tingling, anxiety) are consistent with a vitamin B12 deficiency. Any person at any age (even in the 20s) can develop a B12 deficiency. If this is the cause of your symptoms, a B12 deficiency is easily and inexpensively treated; if caught early, symptoms are usually reversible.
I believe this should be the first condition ruled out in the investigation of symptoms like yours.

When you see your GP, I suggest that you discuss this possibility with him and request thorough initial testing for a possible vitamin B12 deficiency – this includes #1 a serum B12 test, #2 a serum folate test, #3 a serum homocysteine test, and #4 a serum or urinary methylmalonic acid test. A serum B12 test alone is not adequate to detect a B12 deficiency. Do not take B vitamin supplements before testing as this will skew test results. (By the way, I think it is a good idea to request your own copies of any test results – so you have the actual numbers.)

Also, I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Dr. Jeffrey J. Stuart, D.O. (This may be available at your library.): http://b12awareness.org/could-it-be-b12 ... diagnoses/

I have found that when I pursue too many paths at one time and something changes, I don't know which course of action gets the credit for the change. For me, it now works better to consider and rule out one possibility at a time.

I do think that a healthy, balanced, nutritionally-sound, dietary program is good for everyone. Nutrient testing for magnesium, zinc, etc. certainly won't hurt us.
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Re: Symptoms beginning to worry me

Postby jimmylegs » Mon Nov 10, 2014 2:45 pm

re the complexity issue, i got that impression from you a year ago LC - you noticed a positive change in your chronic insulin issues did you not? and you had made more than one change close together at the time. correcting low magnesium intake, and reducing gluten at around the same time, if memory serves. correct me if i am wrong. either way, both steps would certainly have been useful for a chronic disease patient. which really, is the end game however it happens :)

we already know that magnesium is a positive in terms of insulin issues, eg.
Oral Magnesium Supplementation Improves Insulin Sensitivity and Metabolic Control in Type 2 Diabetic Subjects A randomized double-blind controlled trial

as for reducing gluten - in this study, 1 year of gluten free diet reduced the number celiac patients deficient in essential nutrients (usual problems with range definition apply), with the most significant nutritional problem ahead of time being zinc, and the number of zinc deficient patients essentially halved after the 1 yr of gluten free diet alone (figure 1).
http://ajcn.nutrition.org/content/67/3/482.full.pdf
(you'll be pleased to note the dramatic improvement in b12 status as well, even though the number of patients with b12 issues to start with was a small fraction of those with zinc issues).

however:
http://link.springer.com/article/10.100 ... 141#page-1
"this study suggests that zinc improves glucose assimilation, as evidenced by the increase in Kg, and that this improvement results mainly from an increase in glucose effectiveness (insulin-like effect), rather than an action on insulin response or insulin sensitivity."

i definitely have a lot of simultaneous changes in my back story and i'll never know which specific thing achieved the biggest gains. at times i've regretted it but at the end of the day i'm glad i did it that way since realistically nature doesn't work in isolated steps. it's possible - probable actually - that the combinations worked better together than anything would have done piecemeal one ingredient at a time.

your choice marbie, fire all guns at once, or take it systematically one step at a time. personally when i was dxd i was way too frantic for the slow steady approach :) to each their own :D
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Symptoms beginning to worry me

Postby lyndacarol » Mon Nov 10, 2014 6:18 pm

Yes, JL, the details of my situation were just as you describe: I had been trying to reduce my chronically elevated insulin levels for years (and never able to lower them below 9); I made several changes at the same time (I ate a low-carb diet for years, I had tried the Wahls diet, I then eliminated gluten from my diet for about six months before blood tests, to this day I follow a gluten-free diet). I had even done a 3-day water fast before the blood draw.

In our PM exchanges in February this year, I shared the test results, which included:

Insulin........................3.4 uU/mL ......(standard range: 3.0-28.0)
Potassium...................4.4 mmol/L......(standard range: 3.5-5.1)
Magnesium, serum.........2.2 mg/dL .......(standard range: 1.6-2.3)
Zinc, serum.................1.35 mcg/mL ....(standard range: 0.66-1.10)

You also thought my zinc level was on the high side, that it would be better under 130. I was pleased that my insulin level was close to the optimal level of 3 for the first time, but I have NO idea which change actually made the difference (although I suspect it was the 3-day fast, I can't be sure). The lesson for me going forward was to limit my focus to one thing at a time.
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Re: Symptoms beginning to worry me

Postby jimmylegs » Mon Nov 10, 2014 7:21 pm

ah that is great info. so after sorting that issue with the label on the mag bottle, and quadrupling daily mag from 100mg to the intended 400mg per day accordingly if memory serves, your serum level came up to 2.2 (which has been proposed as a lower cutoff in at least one study i have seen), and even still the insulin level was the best it had been in years. i wish there was an older test looking at serum mg and insulin before the mag fix - wonder how low it was.

i would definitely have been a bit concerned about that zinc level (could have implications for iron and copper levels), and probably would have said magnesium could stand to go higher, into the 2.3-2.7 range based on researching levels in healthy controls.

for context check out how that 2.2 serum mag level looks in comparision to various labs' 'normal' ranges:
1.6-2.3 (yours)
1.5-2.5 (common reference range)
1.6-2.6 (my friend's lab)
1.7-2.7 (my lab)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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