No one knows what's wrong with me.

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jimmylegs
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Re: No one knows what's wrong with me.

Post by jimmylegs » Sat Aug 22, 2020 11:50 am

major kudos to you for being forthright in spite of embarrassment.

anti-nutrients, including alcohol, definitely factor into a person's overall nourishment picture.

i definitely have several thoughts / comments for you to consider re your diet/lifestyle and regimen (some may be obvious, some might not).

for right now, i will stay on track with a personal agenda item - i will post again later today / this eve (i did, but then deleted after 7 days inactive - am on a 'low data diet').
https://www.who.int/news-room/q-a-detail/q-a-coronaviruses

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Scott1
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Re: No one knows what's wrong with me.

Post by Scott1 » Sat Aug 22, 2020 4:04 pm

Hi,
There's all sorts of alcoholic people. Some are very high functioning. The thing that would interest me is are the alcoholic drinks mixed with sugary drinks? Addiction to added sugar could be the driver.
Say we jumped well ahead of ourselves and a new MRI confirmed that you had MS related lesions, I would say take all the sugary drinks and empty their containers down the sink. That would be the first step.
The second step would be to ask what is your first meal of the day.
It sounds like you are trying to be methodical and that is the only way, no matter what the issue is.
How do you think you would go if you dumped the sugary drinks?
Regards,

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Re: No one knows what's wrong with me.

Post by NHE » Sat Aug 22, 2020 10:44 pm

katybarthedoor wrote:
Sat Aug 22, 2020 11:29 am
... the b12 shot should have kicked in days ago especially since I also take a sublingual form of it daily and never missed a dose of that.
What brand of sublingual B12 do you take? How much? Does it include anything else, e.g., folate, B6? What form of B12 is it, e.g., cyanocobalamin, methylcobalamin?

Have you ever tried melatonin to help with your sleep? Note that smaller amounts of melatonin have been reported to work better than larger doses, e.g., 1 mg vs. 3 or 5 mg. Some people expect melatonin to work like a sleeping pill, but that's not how it works. It helps to get your body into a sleep mode, it doesn't knock you out.

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Re: No one knows what's wrong with me.

Post by katybarthedoor » Mon Aug 31, 2020 11:44 am

Had a bad week last week and finally got tested for Covid. It came back negative, but either it was a false negative, was some other type of virus or was no longer contagious by the time I tested. Feeling better now and go back to the office tomorrow (they let me work from home until I got my results back).

Scott1, I usually mix my alcohol with diet dr pepper or great value sugar free drink mix. I don't drink water (I know that's bad). I think I would die without my diet dr pepper. LOL I usually eat a breakfast sandwich (jimmy dean) every morning. I was on a diet a while back and was preparing my meals for the week and was not eating processed foods much, but I still prepare my lunch/dinner meals for the week on Sunday and it was too much to do breakfast also.

NHE, I went with a different brand of b12 this time. It's sundown 1200 mcg (cyan). It has b6 2 mg. It says for energy support and nervous system health. B2 1.7 mg and niacin 20 mg. I have tried melatonin (all different kinds) and it does nothing to help me sleep. I don't remember what the mg was, but I'm sure it was the recommended dose.

I just scheduled my MRI for next week and full blood work on Friday, so hopefully something will show up this time so I can get some type of diagnosis and treatment. If it still all comes back negative, then maybe one last visit to the neurologist and see if they will do an LP. If that's negative also, then I guess I will just have to live with it. I will let you know what I find out from the MRI/blood work.

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Re: No one knows what's wrong with me.

Post by jimmylegs » Mon Aug 31, 2020 12:55 pm

of possible interest:

Nutrition in alcohol-related liver disease: Physiopathology and management (2020)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7304106/
https://www.who.int/news-room/q-a-detail/q-a-coronaviruses

take control of your own health.
pursue optimal self care, with or without a diagnosis.

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Scott1
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Re: No one knows what's wrong with me.

Post by Scott1 » Mon Aug 31, 2020 5:22 pm

Hi,

Irrespective of what ever is causing your issues, there are some basic things to consider.
In your body there is a constant battle between inflammatory and non-inflammatory settings. The messengers that predominate in an inflammatory setting are trying to suppress the non-inflammatory settings (and vice versa). It is not as simple as two forces at either end of a seesaw trying to work out a balance. Both can coexist but a lack of non-inflammatory messengers is more harmful than a preponderance of inflammatory messengers. Your diet can go a long way to helping you get to a non-inflammatory setting.
I'm deliberately avoiding complex terminology so we don't get bogged down by it. Whether you have MS or not, the same principles would apply. I do think you need to need to shift to a non-inflammatory setting. You're obviously smart enough to determine what is good for you and what isn't.
There is a dietary testing program called FODMAP. It is probably worth your while, irrespective of the outcome of your testing round, seeing if you can get into this testing regime.
Preferring to drink anything but water is giant warning sign that something is way out of whack.
Regards,

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NHE
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Re: No one knows what's wrong with me.

Post by NHE » Mon Aug 31, 2020 10:57 pm

katybarthedoor wrote:
Mon Aug 31, 2020 11:44 am
Had a bad week last week and finally got tested for Covid. It came back negative, but either it was a false negative, was some other type of virus or was no longer contagious by the time I tested. Feeling better now and go back to the office tomorrow (they let me work from home until I got my results back).

Scott1, I usually mix my alcohol with diet dr pepper or great value sugar free drink mix. I don't drink water (I know that's bad). I think I would die without my diet dr pepper. LOL I usually eat a breakfast sandwich (jimmy dean) every morning. I was on a diet a while back and was preparing my meals for the week and was not eating processed foods much, but I still prepare my lunch/dinner meals for the week on Sunday and it was too much to do breakfast also.

NHE, I went with a different brand of b12 this time. It's sundown 1200 mcg (cyan). It has b6 2 mg. It says for energy support and nervous system health. B2 1.7 mg and niacin 20 mg. I have tried melatonin (all different kinds) and it does nothing to help me sleep. I don't remember what the mg was, but I'm sure it was the recommended dose.

I just scheduled my MRI for next week and full blood work on Friday, so hopefully something will show up this time so I can get some type of diagnosis and treatment. If it still all comes back negative, then maybe one last visit to the neurologist and see if they will do an LP. If that's negative also, then I guess I will just have to live with it. I will let you know what I find out from the MRI/blood work.
Regarding B12, I asked what kind you're using because I've found some to be completely ineffective. One time I ran out of my normal B12 and tried some sublingual methylcobalamin tablets from Jarrow. They did nothing for me and in 4 or 5 days I was feeling depleted again. I normally take sublingual tablets from Superior Source and have found them to be effective. The tablets are small and dissolve in about a minute or so.

https://www.vitacost.com/superior-sourc ... thylfolate

However, as important as B12 is, sometimes it's just one piece of the puzzle. The diet you describe sounds like you're likely depleted of micronutrients. These are all the good nutrients that come from fresh fruit and vegetables.

Years ago I watched a talk given by Dr. Joel Fuhrman that discussed diet and micronutrients. The impact of his diet on MS may be unknown, but his advice is certainly applicable to general overall health. I would encourage you to try some of his dietary guidelines. I suspect that you'll see some benefits.

Here are two of his talks. viewtopic.php?p=246639#p246639

Here is some related info on choosing food varieties with higher nutrient density. viewtopic.php?p=251410#p251410

Lastly, I also have difficulty sleeping. I typically feel much worse when my sleep is disturbed. I don't have any magic answers for you, but will propose that alcohol before going to sleep most likely interferes with restful and restorative sleep.

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Scott1
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Re: No one knows what's wrong with me.

Post by Scott1 » Tue Sep 01, 2020 4:35 pm

Hi,

As we have drifted into general health and sleep issues, I think you may gain some benefit from watching this easy to follow video. At the end it drifts off into a product push but the majority of it is just plain common sense.
For your specific issues you do need to see a neurologist, as discussed earlier but, you should not discount that you may have more than one issue arising at the same time.


Regards,

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Re: No one knows what's wrong with me.

Post by katybarthedoor » Mon Sep 07, 2020 1:26 pm

Hi, all. I am still having fatigue/sleepiness, but it seems like it's worse about every other day. I took a nap yesterday and woke up and had partial hearing loss in both ears. From researching, it could be hypothyroidism or still could be MS or I guess it could be neither. My thyroid tests have always come back normal (last one was in March) and I guess anything can come on suddenly, but then that would not explain all the other stuff that's been happening over the last 8 years. I had blood work Friday and go for my MRI in the morning, so if neither of those come back with anything, I will try a neuro one more time. The fatigue/sleepiness started about 3 weeks ago and then I had weird things going on with my eyes. Redness, painful when moving, blurred vision, etc. which was better after a couple of days. I always have headaches & diarrhea, so that was nothing new, but it did seem more severe than usual part of the time. I just got a shot last week of toradol for my back pain, but my back pain has been worse and usually the shot helps within about 3 days. Now the partial hearing loss. Is it possible that I could have had MS this whole time and am experiencing a relapse now?

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Re: No one knows what's wrong with me.

Post by katybarthedoor » Mon Sep 07, 2020 1:28 pm

Forgot to mention, I also have had dizziness/vertigo.

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Scott1
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Re: No one knows what's wrong with me.

Post by Scott1 » Mon Sep 07, 2020 3:59 pm

Hi,
Right now, your MRI is probably your best guide. I am slightly confused though, hasn't a neurologist ordered the test?
You need to see a neurologist. A GP doesn't have the skill set.
There is definitely something going on but you need specialists.
Regards,

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Re: No one knows what's wrong with me.

Post by katybarthedoor » Mon Sep 07, 2020 6:01 pm

My GP did order the test because I asked her to, but I guess I didn't really think about who was going to read it. I will call the dr.'s office tomorrow and see if they need to refer me to a neuro, so a specialist will be able to determine what is going on. I remember my dr saying that she could refer me to another neuro, but she never did.

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Re: No one knows what's wrong with me.

Post by Scott1 » Mon Sep 07, 2020 6:42 pm

Hi,

A key part of a neurologists role is to determine if your symptoms indicate MS or something else. A GP is just floundering around looking for an idea.
The intention tremor you described some time ago is something a neurologist would look at. A GP wouldn't have a clue.

Regards,

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Re: No one knows what's wrong with me.

Post by katybarthedoor » Thu Sep 10, 2020 4:49 am

I was so fatigued/sleepy yesterday, I missed another day of work. Forced myself to get up today to come to work and I am trying to sing in the car on the way to work and my voice sounds weird (I am a terrible singer, but this was different). It almost sounded like I was coming down with laryngitis. Then I get to work and go to eat my breakfast and my jaw is popping on both sides when I chew. It was fine last night. What is going on? I am still waiting on my bloodwork and MRI results, but I hope something shows up so I can be treated. It seems like there is a new surprise every day (and not a welcome one). Should I call my doctor or wait until my results come in? I still have the partial hearing loss in both ears also that started on Sunday.

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Re: No one knows what's wrong with me.

Post by jimmylegs » Thu Sep 10, 2020 6:59 am

hi sorry to hear you had a bad day yesterday

do you know ahead of time which tests have been run? if you do and are interested in sharing, maybe we could point out any potential testing gaps that might be worth investigating.

from the nutrition standpoint, i've personally gone wrong before, when making assumptions about what could be wrong based on how i feel. good data is key!
https://www.who.int/news-room/q-a-detail/q-a-coronaviruses

take control of your own health.
pursue optimal self care, with or without a diagnosis.

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