Undiagnosed and Anxious

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

Undiagnosed and Anxious

Postby LostandWorried » Sun Jul 08, 2018 8:14 am

Hi guys, I've come to this forum by way of my MS research. Over the past 6 weeks, I've been experiencing a myriad of symptoms that have led me to a possibility of Multiple Sclerosis. My symptoms began as a left sided headache that was accompanied by left sided facial numbness, left arm weakness, and ringing of my left ear. I of course headed to the emergency room where they ruled out stroke, but left me with no diagnosis. The headache is constant. It has not been relieved by anything 6 weeks of treatment provided (numerous ER visits, and a neurology visit). In the last week, my left arm weakness has become constant and associated with a pins and needles feeling. My vision has become blurred in my left eye with double vision noted when driving and reading. My left eye hurts when I move it. I'm having trouble remembering things as well as finding the right words when talking. I've experienced dizziness and stumbling a bit while walking which seem to get worse in the heat. My left eye also twitches. Just recently, I've been battling nausea, loss of appetite, and frequent urination at night. All this is very depressing. I cry often, because I don't know where this will take me, with or without the diagnosis of MS. I'm scheduled for an MRI with and without contrast on Tues 7/17, but I have a follow up appointment with my neuro on Friday. What do you guys think? Could this be MS? :confused: :confused: Just looking for opinions and support here.
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Re: Undiagnosed and Anxious

Postby jimmylegs » Sun Jul 08, 2018 9:04 am

hi and welcome :)

my status quo thing is to emphasize the pursuit of optimal health with the same energy as the search for a diagnosis.
if your day to day does not conform to and exceed public health recommendations for diet and exercise, that is step 1. it will do no harm and it may help clear up the diagnostic picture for your docs.

often, nutritional issues are not picked up in standard testing. if a doc happens to order the right test, they're not likely to recognize an issue. it's a serious and widespread problem.
these real but 'subclinical' nutritional problems are often the ones that have doctors talking about stress as the cause, or assuring patients that it's all in their heads.
if you have never had a referral to a preventative professional such as a dietitian, this could be something to consider in parallel to your other efforts.
ultimately, whether your outcome is ms or not, there's meaningful work to be done where nutrition is concerned.
if you've had standard bloodwork done as part of your process, every bit of info you can share could be useful. having your own copy of everything is key.

B12 is the oldest nutritional test that mainstream docs must rule out en route to an MS dx. if you have that result on file, know it and make sure you are not just 'not deficient', which is a hematological measure, but replete in neurological terms as well. the mainstream only looks at the former. it's your job to advocate for yourself above and beyond the status quo. once you know your level, you can decide whether action will be needed.

D3 is another test that has made it into the mainstream. know that level. the lab will suggest you're okay at a certain level. groups that are free of chronic illnesses tend to have much higher serum levels. make sure you know where you sit and what action may be required to be not only 'normal' (in a disease prone society, who wants to be that??) but OPTIMAL.

after b12 and d3, anyone interested in nutrient testing and repletion to exclude ms will depart from the mainstream, but at least those two are a good place to start. along with the regular bloodwork eg for electrolytes and such, b12 and d3 should already be on the radar if they haven't been tested already. they should therefore be low hanging fruit in terms of getting access to those numbers. and once you have them, you can act :)

another step, in prep for a visit to a dietitian (or in order to assess independently), is to track your daily intake of nutrients (and anti nutrients). a three day diet diary is a standard way for a dietitian to get a sense of your routine and to advise on improvements.
diet diaries should read like recipe ingredients, not like menu items.
you'll want to include any and all food, fluids including alcohol, meds (rx or over the counter) and supplements.
stress level is also useful info - whether physical eg exercise, exertion at work, injury including surgery etc, or emotional.

we'll look forward to seeing whatever info you might have on hand and be able to share :)
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: Undiagnosed and Anxious

Postby Snoopy » Sun Jul 08, 2018 9:59 am

Hi LostandWorried.

What do you guys think? Could this be MS?


Maybe, maybe not. It's impossible to diagnose MS based on symptoms alone. Many conditions mimic MS so testing to rule in/out other conditions as well as testing and neurological exam/evaluation that will indicate MS as a cause for symptoms.

My vision has become blurred in my left eye with double vision noted when driving and reading.


Has this been confirmed by a Ophthalmologist? If not I would suggest making an appointment to see one. Blurred and/or double vision doesn't necessarily mean MS or even a Neurological disease. Your Headaches which might be migraines can cause the symptoms you are experiencing. Eye twitching is experienced by the majority of the population and can be due to eye strain/eye fatigue, stress and other benign reasons.

I hope all goes well with your MRIs and that answers will be coming soon. Please have an open mind until testing is done. Take care....
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Re: Undiagnosed and Anxious

Postby LostandWorried » Sun Jul 08, 2018 12:26 pm

jimmylegs wrote:

after b12 and d3, anyone interested in nutrient testing and repletion to exclude ms will depart from the mainstream, but at least those two are a good place to start. along with the regular bloodwork eg for electrolytes and such, b12 and d3 should already be on the radar if they haven't been tested already. they should therefore be low hanging fruit in terms of getting access to those numbers. and once you have them, you can act :)

another step, in prep for a visit to a dietitian (or in order to assess independently), is to track your daily intake of nutrients (and anti nutrients). a three day diet diary is a standard way for a dietitian to get a sense of your routine and to advise on improvements.
diet diaries should read like recipe ingredients, not like menu items.
you'll want to include any and all food, fluids including alcohol, meds (rx or over the counter) and supplements.
stress level is also useful info - whether physical eg exercise, exertion at work, injury including surgery etc, or emotional.

we'll look forward to seeing whatever info you might have on hand and be able to share :)



Thank you for the info. I'll look into it!
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Re: Undiagnosed and Anxious

Postby LostandWorried » Sun Jul 08, 2018 12:40 pm

Snoopy wrote:
Maybe, maybe not. It's impossible to diagnose MS based on symptoms alone. Many conditions mimic MS so testing to rule in/out other conditions as well as testing and neurological exam/evaluation that will indicate MS as a cause for symptoms.


Thanks Snoopy for reading and offering insight. Again, I'm not looking for a diagnosis but opinions and support.

Has this been confirmed by a Ophthalmologist? If not I would suggest making an appointment to see one. Blurred and/or double vision doesn't necessarily mean MS or even a Neurological disease. Your Headaches which might be migraines can cause the symptoms you are experiencing. Eye twitching is experienced by the majority of the population and can be due to eye strain/eye fatigue, stress and other benign reasons.


I think what most has me worried is not the isolated symptoms, but their occurrence simultaneously. I hope you're right
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Re: Undiagnosed and Anxious

Postby jimmylegs » Sun Jul 08, 2018 12:44 pm

i was just having a think - and this changes nothing whatsoever in terms of pursuit of healthy optimal status - and reading a little about bell's palsy. to your knowledge, have your docs considered it as a possibility?

early findings..

Recent developments in Bell's palsy (2004)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC516110/

"Box 2: Evolving treatments for Bell's palsy
Some evidence of effect
Methylcobalamin—an active form of vitamin B-12"

Bell’s palsy at high altitude -- an unsuspected finding (2016 case report)
https://mmrjournal.biomedcentral.com/ar ... 016-0073-6

"We report a young soldier, who presented with Bell’s palsy and neuroimaging revealed an unsuspected finding of multiple intracranial calcifications. Detailed evaluation revealed the additional diagnosis of vitamin D deficiency and secondary hyperparathyroidism due to lack of sun exposure at high altitude area"

... and a severe deficiency it was too, single digits - ouch

so far, there seems to be hardly any research on nutrient status in bell's palsy.
handy that these examples coincide neatly with the two nutrients most likely to be tested routinely during an ms ddx
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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jimmylegs
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Re: Undiagnosed and Anxious

Postby jimmylegs » Mon Jul 09, 2018 4:07 am

i normally avoid 'dx guessing game'. but also noted that myasthenia gravis, if one-sided, can look like bell's palsy. there's an old nutritional protocol which is meant to be better for MG than MS, and while my spin on it did me a lot of good, so far i see *zero* academic support for the approach in the MG literature.
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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jimmylegs
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Re: Undiagnosed and Anxious

Postby LostandWorried » Mon Jul 09, 2018 5:21 am

Jimmy-

Bell’s Palsey has been thought of. I’d like more information on diet. There’s another section in the forum that contains this info, correct?
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Re: Undiagnosed and Anxious

Postby jimmylegs » Mon Jul 09, 2018 6:05 am

hi yes there's a 'diet' section and a 'natural approach' section for nutrition.

the former has an array of diet protocols that will be more or less relevant for any one individual depending on their back story. there's a reason these diets don't work for everyone! based on the available scientific evidence i personally lean not to an ms diet per se, but to the mediterranean diet and the harvard healthy eating plate.

the natural approach forum has the most detail on specific nutrients. to my way of thinking, this is an important element to understand. which are the healthy nutrient dense foods that will help achieve optimal nutrient status, within the mediterranean / healthy eating plate framework. it's still possible to make less than ideal choices when working to adhere to the healthy eating plate. it's important to know the array of food choices which can help get you the most essential nutrient bang for your calorie buck.
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!
User avatar
jimmylegs
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Posts: 11764
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