Please help me find out what’s wrong with me.miss the old me

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

Please help me find out what’s wrong with me.miss the old me

Postby Needlifeback » Fri Dec 01, 2017 5:34 pm

I posted this in introductions on accident lol. Duh. Sorry if you come across this twice.
Sorry it’s so long. Just don’t want to miss anything. Lol
hello all. I’m new to this community and never reached out for help but it seems I don’t get any help from drs and who better to ask then from the community that has probably been in my exact shoes
I have been having severe flare ups over the last two years that were months apart the first year and now every month I have one. I’ve had trigeminal neuralgia twice, burning; tingling legs; now constant pain under ribs that wraps around my back that’s debilitating, vision problems on and off, bee stings on spine at times, odd vibration in right shoulder blade on and off for seconds at a time, memory issues, tripping, running into walls, head tingly, carpal tunnel syndrome, right arm weakness, leg and arm fatigue (tired just putting make up on or going up a few steps) feet are painful like a band of pain on top of foot wrapping to bottom making walking more and more difficult as time passes and extreme fatigue at times. With all that my pcp referred me to a spine dr who ordered a brain mri without contrast and they only found five nonspecific lesions T2 Flair touching the anterior horns of the lateral ventricles and one in the right side subinsular cortex. The mri report suggested a spinal tap if I had inflammation which I have had for two years and the only thing that helps is steroids; which my pcp gives sparingly so when I’m starting to feel good again I’m done with treatment. My neurologist I was referred to after the brain scan seems to be stringing me along. No additional mris, thinks I need to see a rheumatologist which I already have and nothing gained from it. I’m seriously frustrated that additional tests are not being done to find out what’s wrong with me other than Lyme, b12, Sjogrens, thyroid, diabetes, immunoeletrophoresis, lupus, etc all came back negative. I am barely holding onto my job and work, home, shower and bed from exhaustion and pain. Not a life. Any suggestions would be greatly appreciated. I’ve seen gastro, rheumatologist, gyno, pcp for all kinds of Lyme and blood work and all good except slightly elevated c reactive protein (5 mg/l) and slightly elevated plt (406x10’3/) which goes up very little every year and low mpv (8.9). Which are so slight they don’t even matter. What tests should I ask for and what would be the significance of the few lesions, if any significance at all. I’m desperate for answers and ideas or suggestions. I need my life back. I was an active speed walker and always called energizer bunny and now this from age 44 to 46
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Re: Please help me find out what’s wrong with me.miss the ol

Postby jimmylegs » Fri Dec 01, 2017 5:39 pm

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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: Please help me find out what’s wrong with me.miss the ol

Postby Scott1 » Fri Dec 01, 2017 7:06 pm

Hi,

Are you diagnosed with MS or not? I'm a little unsure.

Lets turn the symptoms into some sort of priority first. If you didn't have fatigue do you think some of the other problems would be more manageable?

What did the MRI show?

As you have many negative results from your tests but a slightly elevated PLT, have you been tested for mycoplasma or chlamydia pn? Did anyone suggest even a slight anemia?

I'd ask for tests by a hematologist at a minimum.

What you've described make me think about ischemic symptoms where the amount of properly oxygenated blood is a little on the low side. There can be many reasons for that.

Provided what you said about not being diabetic is accurate, you could look at the protocols of Stephen Sinatra in this book - https://www.goodreads.com/book/show/277 ... a-solution

It's written by a cardiologist with the heart muscle in mind but what it says is just as true for every cell in your body. It is specifically addressing the impact of an ischemic event.

Given all that, I do think someone needs to look closely at your blood and bone marrow for very difficult to detect chronic infection. That needs a specialist not a GP.

Regards,
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Re: Please help me find out what’s wrong with me.miss the ol

Postby jimmylegs » Fri Dec 01, 2017 7:37 pm

what was your b12 result, iima? worth a closer look, if you're interested. have some thoughts re elevated crp too.
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: 10780
Joined: Sat Mar 11, 2006 3:00 pm


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