Really Think So Now

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

Really Think So Now

Postby MnRdunck » Fri Nov 17, 2017 3:01 pm

This is my second time posting about this. I have now a Neurologist, a Radiologist and my Family Doctor all saying that I have MS. But I have another Neurologist who read the films who said that my lesions are from my migraines. So the facts are 1.) There are lesions 2.) I have chronic migraines 3.) I am having some sort neurological attacks. There are 5 lesions and from what I understand diagnosing migraine lesions is a judgement call no specific outline exists. I am on a migraine preventative medication and another for actual migraines my medical and pharmaceutical histories would have been known to him. Now there is a 3rd neurologist that I will get to in a moment. I have had two separate neurological attacks. What happens is my chronic pain get way amplified and I get brain pain, not a headache by any stretch of the imagination but it is like someone ripped my skull open scrubbed my brain with a metal pot scrubber and then stuck in a million electrified needles into the area. It is not all over but just in the front of my head kinda in my forehead and a little into the hair line so not sinuses. And it is an electric pain. It takes 3 days to build up to its worse then lasts 2 more days and is suddenly just over. Doesn't work it's way down, just stops as if it never happened, these two attacks were 31 days apart. The 1st I rode out at home I was going to kill myself the pain was so bad I have never experienced anything close or similar before. The second time I went to the hospital and was admitted. I was there 3 days, I was treated with dilauded for the pain then they switched to giving me my regular doses of morphine, 4 times a day, with dilauded for breakthrough pain and toradol. I was also given an IV steroid. They managed to break this thing before it hit it's worse. The time I rode it out it fills my head with so much pain that I am incapable of thought I can not even think to myself that it is the worse pain I have ever felt because literally I can not think when it surges there is no room for thought. This is all an electrical nerve thing which I have never had nerve pain before nor is there any reason for it now. So when I am in the hospital in comes a useless Neurologist he is very vague with talking to me repeatedly telling me that he has never seen me before, will never see me again, and is just seeing me at this one moment in time, over and over again. But I do get that he thinks that it is a migraine and not MS. But I have always had migraines since I was about 8 or 10 and they have always been through my left eye and out the back of the bottom left side of my head. Interestingly enough I have been told that there is an arachnoid cyst in the direct path that my migraines take. Whether or not that factors in or is just a "Happy Coincidence" I don't know. When my migraines come they feel like a cold steel rod has pierced my skull through my left eye and out the back of my head. A sharp stabbing pain, not really the electrical pain that I have been feeling, that is more so what a migraine entails for me. So I do not know what it was that helped me the steroids, the toradol, the dilauded?????????????

My Problems as I think they relate:

Nerve Pain
Migraines
Chronic Pain
Neuropathy
Muscular Skelton Problems
Ataxia
Numbness, Loss of Sensation
Twitches, Shakes, Jerks, Involuntary Movements
Memory Loss, Loss for/of Common Words
Depression, Bi-Polar, Personality Disorder, PTSD
Fatigued, Tired
Worsening Vision
Hearing Loss
Bladder Problems
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Re: Really Think So Now

Postby jimmylegs » Fri Nov 17, 2017 4:55 pm

heya, have you been through this 2012 article and if so, are there any of the headaches listed therein that sound similar to your xp?

Unusual headaches
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4117064/
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: Really Think So Now

Postby MnRdunck » Sat Nov 18, 2017 3:22 am

Thank you for the reply I read each one carefully and not a single one came close to what is happening to me. As they are not brought on at sleep, sexual activity or exertion. And none of the symptoms were close. I still have not been able to find a headache that takes 3 days to build up and lasts for a total of 5. Migraines have what is called a premonition phase if you are not familiar even before any migraine symptoms you just know that it is going to happen. Tension headaches are muscular and clusters are a yearly type headache not a monthly event. And they do something to an eye when they occur. That is why I was positive it was not a migraine or any other type of headache I had ever heard of.
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Re: Really Think So Now

Postby MnRdunck » Sat Nov 18, 2017 4:07 am

I went to the International Headache Society, I guess I was wrong to use the word chronic, I have Migraines without aura so I went through and read about the classifications of headaches and systimatically ruled out these: Migraine, tension-type headache, Cluster headache, cough headache, thunderclap headache, Headache attributed to external application of a cold stimulus, External-pressure headache (pressure/compression/traction), Nummular headache, Hypnic headache, Headache attributed to cranial or cervical vascular disorder, Headache attributed to a substance or its withdrawal, Headache attributed to infection, Headache attributed to disorder of homoeostasis, Headache or facial pain attributed to disorder of the cranium, neck, eyes, ears, nose, sinuses,  teeth, mouth or other facial or cervical structure, Epicrania fugax, Tolosa-Hunt Syndrome, Raeder Syndrome, Ophthalmoplegic migraine.


THIS ONE FITS: Central neuropathic pain attributed to multiple sclerosis (MS) It Is A Headache
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Re: Really Think So Now

Postby jimmylegs » Sat Nov 18, 2017 4:28 am

ah, while you wrote i had been down this rabbit hole so for the record:

anything in this
https://academic.oup.com/brain/article/ ... 091/285329

or this
http://onlinelibrary.wiley.com/doi/10.1 ... 12302/full

or these ??(virus x pre-existing stuff = ... )??
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3321795/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4807952/

or any of these titles
http://bit.ly/2zerfBi
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: Really Think So Now

Postby jimmylegs » Sat Nov 18, 2017 4:37 am

so given cnp, would you say this lines up with your xp to date

http://www.sciencedirect.com/science/ar ... 2214702510
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
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Re: Really Think So Now

Postby jimmylegs » Sat Nov 18, 2017 4:42 am

me being me

Magnesium in Pain Research: State of the Art (2017)
http://www.ingentaconnect.com/contenton ... 4/art00010

related trial in the works
https://trialsjournal.biomedcentral.com ... 017-2254-3

... circling back around to bloodwork ...
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: 10772
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Re: Really Think So Now

Postby ElliotB » Sat Nov 18, 2017 5:03 am

If you are planning on only relying on prescription medication(s), having a diagnosis is critical.

If you plan on self treatment, a diagnosis would be nice to have but not necessary - the best 'non medical' treatment options for diseases of inflammation (which covers many, many diseases) is pretty much the same for because they all have pretty much the same causes and treatment options that help one will likely help all.

And regardless of a doctor's diagnosis or lack of, if you feel strongly about what you have, you should treat it accordingly.
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Re: Really Think So Now

Postby MnRdunck » Sat Nov 18, 2017 5:35 am

I take 250mg of magnesium daily already so I am not sure, is that enough? My doctor had told me that there is actually no reliable blood test for magnesium the only way to really test is tissue samples and I am a little reluctant to give one. I have also been on 500mg of B12 for quite awhile as well.
So I have ruled out 17 different categories of headaches it took me over 2½ hours to do so. So I am pretty sure that I was thorough. Most had quite a few sub-categories, I read them all. I do have 1 supporting MRI for the MS diagnosis with a second scheduled for the 30th. I have just realized that I also have chronic fatigue syndrome. I am up for say 38 hours, sleep for 4, then up for another 28 and then finally get about 10. Which the math comes out to about an average of 14 hours of sleep every 3 days. There are a lot of possibilities for this as well. I can't rule anything out yet, I am supposed to have a sleep study it just has not been ordered as of yet. My family Dr is pretty convinced that I do have MS as well.

And my nerve pain remains out of control. I am very desperate at this point as I am doing my best for my family. I can not be like this much longer. I need, I have to do something. No more waiting it is too late already. Betaseron is what the one Neurologist wants to immediately start me on. According to him I am almost always in an attack though I am not sure about that. He was the one to first say that I had MS, he based it on my exams and said that the MRI was just a confirmation of this. I am really leaning towards MS and at this point am willing to try just about anything if it will help me.
Last edited by MnRdunck on Sat Nov 18, 2017 6:11 am, edited 1 time in total.
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Re: Really Think So Now

Postby MnRdunck » Sat Nov 18, 2017 5:38 am

Out of every thing that I have read over the last several months and believe me this consumes me it is about all I use the internet for. This seems the closest thing yet.

https://entokey.com/central-neuropathic ... headaches/

I have chronic back pain. There is no injury, mild stenosis, not to much degeneration . It is getting worse. CBD is very helpful.

http://www.scielo.br/scielo.php?script= ... 6000500067

Central neuropathic pain seems to be a thing as well as:
Allodynia

Allodynia is a particularly painful sensation as a response to a normally innocuous stimulus such as a light touch, bed sheets, or clothes. It is usually short-lived, and last only as long as the stimulus remains.

LHermitte’s Sign

LHermitte’s (also spelled l’Hermitte’s)Sign is a sudden brief, stabbing, electric-shock-like sensation that runs from the back of the head down the spine and goes into arms or legs. It is triggered by bending the neck forward, often after a cough or sneeze.

T** onic Spasms**

Tonic spasms are painful spasms that cause legs or arms to move unexpectedly or jerk, and usually last for only seconds. These spasms may also result in stiff or rigid muscles or limbs.







My last blood work a CBC WITH AUTO DIFF showed only two things wrong. My MPV was high and my ABS Lymphocytes was low. Cancer, Lupus, HIV, AIDS, HEP etc... have all been ruled out.
Last edited by MnRdunck on Sat Nov 18, 2017 6:13 am, edited 1 time in total.
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Re: Really Think So Now

Postby jimmylegs » Sat Nov 18, 2017 6:13 am

serum mag is useful. sounds like doc may not be up to date on the relevant research. if the doc route is a no for testing, you can try something like this
http://www.lifeextension.com/vitamins-s ... blood-test

re the supplement, it depends on several factors. what form of mag is the 250, and do you take it with other supplements and/or food?

what is your daily magnesium intake requirement, in milligrams, per local public health guidelines for your age and gender?

what is your daily requirement using a range of 7-10mg/kg body weight? (aiming for the higher end if environmental influences are likely to have a depleting impact on mag, eg high physical and/or emotional stress, you probably see where i'm going with this... also any meds or other antinutrients which may interfere etc)

what is your typical daily mag intake from food and fluids. if unknown, track all food and fluids for three days. estimate serving size for each separate item. search my most recent posts for an example.

if CFS is in the picture, it's a red flag for magnesium status. if MS is in the picture, it's a red flag for magnesium status. when the serum mag test comes back, as with other tests you're interested in exact results, with units, vs blanket 'normal' statements.

whatever ends up working for you, I hope you find it soon!!!

ps this is new since i last had a look at cfs and fm
http://journals.plos.org/plosone/articl ... ne.0176631
will be worth a closer look at the studies included.
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
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Re: Really Think So Now

Postby MnRdunck » Sat Nov 18, 2017 6:23 am

I take it in pill form from Nature Made, I figure you might know if that is a good one or not. The CFS also has roots to my back pain. It is what wakes me up thru out the night. I am running on two nights with less than 8 hrs of sleep between the two. Ruled out everything here:
https://www.nationalmssociety.org/Sympt ... o-Rule-Out

Doesn't mean there is not something else but if this were you would you try betaseron at this point? I am very desperate something has to help me.
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Re: Really Think So Now

Postby jimmylegs » Sat Nov 18, 2017 6:46 am

do you have a link to the label info for your specific nature made product? i'll be interested to hear the rest of your response to the mag questions above.

ugh. deficiencies section in the 'rule out' link above is deplorable :S yikes. for starters, most everyone's results are 'normal' (<SARCASM>society in general being perfectly healthy, we should take a stats normal as a good thing right??</SARCASM>)
with chronic illnesses vs truly healthy controls, we are talking about low vs mid/high 'normal' in many cases

i am afraid i'm not the person to advise re choice of drug therapy - you could pose that question on a relevant treatment forum.
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
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Re: Really Think So Now

Postby jimmylegs » Sat Nov 18, 2017 6:53 am

and PTSD is a red flag for mag status. physical and psychiatric may not be as distinct as we have tended to believe

recent related article abstract posts:
mental-spiritual-health-f19/topic29540.html#p250366
mental-spiritual-health-f19/topic29566.html#p250590
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: 10772
Joined: Sat Mar 11, 2006 3:00 pm

Re: Really Think So Now

Postby MnRdunck » Sat Nov 18, 2017 6:55 am

Thanks last thing I did not mention and it may be just another "Happy Coincidence" independent of everything or tie in. My feet get hot when I put on socks now, this is something with in the last year they absolutely burn up when I add shoes to that. Don't know about the hands yet as I have not broke out my Winter gear yet. So I don't wear gloves. As far as what you had asked I am afraid I know nothing about any intake of vitamins, minerals, or even calories. Nor would I really know how to count them in the first place. Thank you again I will try the betaseron forum.
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