When to stop

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

When to stop

Postby Luongo » Mon Jan 15, 2018 11:34 am

I’ve been undiagnosed for a while. Had an ‘attack’ of some kind in late 2010, with visual symptoms, numbness, and muscle twitches. Went to a neurologist, who ordered MRI of brain and C spine (no contrast). Was normal. Kicked around for a year trying to get my eyes fixed with no success, and in late 2011 a neuro-ophthalmologist ordered another brain MRI, this time with contrast. Also normal.

Nothing happened for a while, thankfully. I had some problems in 2015 that were unrelated, but then in 2016 I had sudden rushes of dizziness... outside, I’m fine but indoors the dizziness can get quite intense. Went for another brain MRI in summer 2016: again normal.

I’ve been sick a few times this winter and when I’m sick, my ongoing symptoms get worse (eyes, dizziness, etc) which resurrects the MS fears. Hopefully it will go away when the sickness subsides, but the fears remain.

But at this point, what can I do? I don’t have new symptoms persay, so when I’ve seen my PCP, they really don’t have the argument for insurance to cover further testing (understandable).

My greatest fear is that any possible damage exists in my spine this much later and this is some early manifestation of PPMS, although the symptoms don’t point so much to spine.

Any advice? Is it time to stop? Am I going too far now?
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Re: When to stop

Postby ElliotB » Mon Jan 15, 2018 11:43 am

Sorry to hear you are still ill. What I did prior to my diagnosis was assume the worst (I knew I had something serious) and adjusted my life (diet, exercise, nutrients, lifestyle, etc.) in every way as I felt I would have had I had to do had i had a diagnosis (of some kind).


Diseases typically are very much related (usually a result of inflammation) and non-medical treatment is often the same. A diagnosis is best/required for medical/drug intervention.


Have you had blood work done recently? How is your general health? What kind of diet do you follow? Being in limbo for so many years can be quiet frustrating but there is much you can do to feel better without medical intervention.

When to stop? IMHO, never!
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Re: When to stop

Postby jimmylegs » Mon Jan 15, 2018 12:10 pm

echoing the don't give up sentiment! status quo clearly isn't working.

you can pursue optimal health at least as diligently as you have pursued diagnosis to date.

you might ask for referral to preventative health specialists such as a pro dietitian.

consider getting a copy of any available bloodwork results. figure out if they've missed out on some useful advice re certain results. or if certain useful tests have not been done to date.

lots of potential action items!
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: When to stop

Postby Luongo » Mon Jan 15, 2018 12:18 pm

Thanks for the quick responses

I’ve had more blood drawn from my body in the past several years than i can remember. Tests from typical blood panels to extremely rare, specialized tests. My Vitamin D is low (sits around 38). Nothing else sticks out (magnesium, B12, thyroid, gluten, ANA, etc.).

Diet is... terrible. I eat anything. I take vitamin supplements, but don’t adhere to a particular diet. I’m not sure where a dietitian would take it... my overall health is fine, I suppose. I have this... feeling. Fuzziness or disassociation or something that really disturbs me and I struggle to just ‘see’ things. I can’t explain it. This really disturbs me, along with the idea of PPMS.

Going on 8 years of limbo is crazy. Part of me wants to stick my head in a hole and just say there’s nothing more to be done at this point to try and salvage some tiny molecule of sanity/mental health, but another part of me thinks that is insane and that I’ve already wasted years that could have been on a DMD.
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Re: When to stop

Postby ElliotB » Mon Jan 15, 2018 1:50 pm

"Diet is... terrible. I eat anything."

You might want to reconsider this given your health issues, although my brother who also has MS follows your diet and is doing fantastic... No one really knows if diet even helps and which one is the best...
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Re: When to stop

Postby Luongo » Mon Jan 15, 2018 2:03 pm

ElliotB wrote:"Diet is... terrible. I eat anything."

You might want to reconsider this given your health issues, although my brother who also has MS follows your diet and is doing fantastic... No one really knows if diet even helps and which one is the best...


Yeah, it’s a real crap shoot. There’s health benefits to these types of diets (MS or not) but there’s also something to be said for the occasional indulgence in sweet treats, fast food, or alcohol to raise the spirits... although ‘every day’ is probably more than occasional.

I usually test drive some kind of new health habit/diet for Lent. Maybe I should give an MS diet an honest shot this year.
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Re: When to stop

Postby Snoopy » Mon Jan 15, 2018 2:16 pm

Hi Luongo,

Based on your Neurology testing there doesn't appear to be any concern of Multiple Sclerosis and especially PPMS. You are correct, there is no indication of spinal cord involvement based on what you have written.

It does appear you deal with a possible mental health issue, such as anxiety. Mental health problems can manifest into very real physical symptoms. Even your fear of MS after many years of no indication points to mental health issues.

fuzziness or disassociation or something that really disturbs me and I struggle to just ‘see’ things.

With normal Neurological exams/testing and normal eye exams this would more than likely be due to whatever mental health problem you may have. Mental Health Professionals (Psychiatrist and/or Psychotherapist) might be the best next step.
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Re: When to stop

Postby jimmylegs » Mon Jan 15, 2018 2:35 pm

hi would you be comfortable sharing your b12 and magnesium results, can we assume your d3 result is in nmol/L, and do you have a number for serum zinc on file?

without an msdx i would not recommend an ms diet. ensuring your diet adheres to public health guidelines would be the most logical first step.

can you itemize your last three days of meals, snacks, beverages, supplements and any meds? what about exercise?
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: When to stop

Postby jimmylegs » Tue Jan 16, 2018 6:06 am

in review i see mid low for b12. do you have specifics handy? still curious about regimen.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
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Posts: 10981
Joined: Sat Mar 11, 2006 3:00 pm

Re: When to stop

Postby Zyklon » Tue Jan 16, 2018 8:46 am

When hell freezes over ;)

Work hard, it will worth your effort.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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Re: When to stop

Postby jimmylegs » Tue Jan 16, 2018 10:33 am

z to my memory you're pretty much the hardest worker i've ever seen here, in terms of getting answers fast, having a go-getter attitude and taking action accordingly.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
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Posts: 10981
Joined: Sat Mar 11, 2006 3:00 pm

Re: When to stop

Postby Luongo » Tue Jan 16, 2018 12:34 pm

Snoopy - Thanks for the reply. As an aside, are you the same Snoopy from MSworld? I enjoy your calm perspective on things. I have a well known case of GAD, which I acknowledge and why I run things by other people (like this forum) to try and understand when I’ve gone past realistic measures. I do see a therapist (who I like very much, although we haven’t tackled the health anxiety issue yet). But I also have very real symptoms, and it’s these symptoms that have driven my anxiety crazy. I think any person who could experience my vision or dizziness would certainly admit this is not a manifestation of some anxiety that occurred after the fact

jimmylegs - I take 10,000 IU of Vitamin D3, 1000 mcg of B12, and a Flax Seed oil pill a day. My diet is just so... all over the place. Lunch was leftover rice, Taco Bell, and a chicken soup the last three days respectively. Dinner was pho, Mongolian beef, and Caribbean chicken. I had some chocolate every day. Not much else in the way of snacking. My zinc level was in the average range, but I don’t remember exact numbers offhand.

For those who advocate I continue... where to? A third neurologist?
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Re: When to stop

Postby Scott1 » Tue Jan 16, 2018 1:06 pm

Hi,

If we go back to your first post, you say you get dizzy indoors but not outside. Is that correct? If it is, perhaps you should be looking for allergens not MS. You would be amazed how extensive the list possible list of suspects is. Have you tried getting tested by an allergist?

Regards,
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Re: When to stop

Postby jimmylegs » Tue Jan 16, 2018 1:35 pm

"jimmylegs - I take 10,000 IU of Vitamin D3, 1000 mcg of B12, and a Flax Seed oil pill a day."

thanks for the info! that is a frankly scary regimen to my eye. not one whiff of d3 cofactors. i've suffered the consequences of that kind of approach *shudder*

"My diet is just so... all over the place. Lunch was leftover rice, Taco Bell, and a chicken soup the last three days respectively. Dinner was pho, Mongolian beef, and Caribbean chicken. I had some chocolate every day. Not much else in the way of snacking."

a diet diary is much better conveyed so that it reads like a recipe and not like a menu. it's not easy to evaluate the nutrient density of 'pho'. but the pho ingredients? that, people can work with.

"My zinc level was in the average range, but I don’t remember exact numbers offhand."

it will be very much in your best interests to get yourself your own copy of all prior bloodwork. there will be actionable pieces of info in there for absolute certain.

'average zinc' matches levels seen in patients with various diseases. high zinc matches levels seen in healthy controls. i can't stress enough how poorly labs generally do at conveying nutrient status when using mainstream 'normal' reference ranges. should be illegal.

related study - HIGHLY recommended reading. all levels 'normal' - and a clear low-normal vs high-normal divide between sick and healthy.

natural-approach-f27/topic29847.html
and that's just with zinc. it's repeated across a whole spectrum of nutrients of importance for ms patients, including low normal magnesium (made worse with high dose d3), low normal vit b12, low normal vit d3, and more.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: When to stop

Postby Luongo » Thu Jan 18, 2018 2:52 pm

Scott1 - The dizziness is pretty bad indoors, right now especially. I feel more at balance walking with my eyes closed (not exactly doable obviously). I think an allergen specialist is a great idea, I haven’t seen one before. My eyes are extremely dry and a bit puffy as well right now too for whatever that’s worth.

jimmy - D3 cofactors? Can you elaborate?

I definitely haven’t put much effort into itemizing my diet, I’m sure I could do better on that. I used to take zinc, but stopped after I ran out of my supply. I forgot to mention, I also take a fiber pill daily as well.
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