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how about multiple sclerosis? sounds a lot like FM

Started by LizardKing, May 22, 2016, 03:57:10 PM

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LizardKing

I have been looking into other diseases and see that a LOT of the same symptoms appear in both.
Yet, it takes seeing a neurologist and and MRI/spinal fluid test to diag MS.
How many here have been tested? So many common symptoms.
I read a lot that FM doesn't get worse with age but the past half decade I have been getting worse,
esp. a few things have gotten really bad, like right now I am trying to think over the loud tinnitus I've had the past 6 months.
What does it take to get a doctor to take you seriously enough to do the test and give the referrals?

About 18 months after losing my bladder to cancer I started pissing blood again and this year had two
incidents and still can't get it taken serious.
Hints?
Have any of y'all been diag'd with FM then later with MS?

Lonesome George

I had the same thoughts about MS.  I had an MRI of the brain last year, and no lesions or any signs of MS.  So, for me anyway, the fibro is fibro, and no involvement with MS.

Barberian

#2
From what I understand, MS is a brakedown/attack of the lining surrounding the nerve fibers causing them to lose the ability to transmit info - they stop working. You slowly lose the ability to move parts of your body. The farther from your brain, the worse works/weeker your body/parts are generally. Overall from the people I've known, it isn't that painful, you just slowly lose sensations.

Fibro, our nerves work just fine, firing too strongly/often.

My wife, medically is a basket case. She has been diagnosed with both MS and fibro. She is always in pain like us, and has a hard time holding onto stuff. Fun times...


ronr

It has been speculated that FiBro is a sub-clinical form of MS.  The docs don't want to do any extra testing unless pushed really hard.  If you don't show enough signs of something else then you are stuck with the FiBro diagnosis.

Years later though I am showing some white spots on the brain and the MRI for that was never done when I got the FM diagnosis.  Only when some things suddenly started going numb was that done. 
Times are tough when "Happy Hour" is your nap.
My mind not only wanders, sometimes it leaves completely!

db

I'm pretty sure MS and fibro are different but since the doctors don't really seem to know what fibro is they are forced to give us some kind of explanation.     :emowall:

I had the same thoughts about MS.  I suspect that's why they gave me a few MRI's.  They never saw the lesions thankfully.  :biggrin:  Also, my symptoms started in the neck and upper back and seemed to take awhile to affect the outer limbs.  MS sounds like it works from the outside in.  Or at least that what people seem to say.  old-man/cane

I would think if you have MS, then the fibro diagnosis would not apply.  Once your neurosystem has been affected I would think that is enough to explain any and all other symptoms that start to appear.  MS certainly seems like the harder road to have to go down  : :( :  even though some people seem to manage better at times.  I know allot don't.   :giveup:

db

LizardKing

Well, the tinnitus started me looking, the sort of numbness and tingling in my hands and feet the past few years made me look closer.
This year I started with serious pruritis and sometime strange feelings (almost like wetness though not wet) on my skin at times
and some other things that are new or more frequent than before.

Never had a brain MRI.
Just got an EarThroatNose appt, will force a sleep study to be done since I have learned I have apnea.
The more uncommon tests that are done, the more problems they find....


Barberian

I went through a six month scare back around 2000. They would send me for a test that would come back looking like I had condition Q. They would follow up and rule out condition Q, but then it looked like I might have conditon Z. Rinse repeat. Every month I had a condition ruled out, but another suggested. A few of them were life threatening.  :yikes:

I definatly had something wrong,  had the endurance of a 150 yr old and COPD, but they couldn't nail down just what was wrong. Overall from when I fell apart to mostly recovered it was around 3 -4 years. I still haven't gotten everything back, but I can get aroud as expected for a 50 yr old with fibro instead of a 150 yr old like I was. I still don't know what was wrong - severe onset and attack of CFS/fibro, mild heart attack, or who knows...

I hope all goes well for you with a quick recovery. Fibro can be a tricky bastage at times.


db

Yes, I remember the time before I knew what fibro was.  The doctors always thought it was something for someone else to deal with.  Finally when they decided it wasn't going to go away, they would check and find I was the picture of health.  No arthritis to explain my pinched nerve diagnosis so I wasn't a surgical candidate.   :biggrin:

The problem was, no one seemed to think they needed to follow up on my condition so I would end up over exhausted, in the clinic and the doctor there would make another guess.   :emowall:

I guess they just don't know.  I was too sick to be much help.  I could barely talk anymore.  :emocrazy:

I could see them making any number of bad/ wrong diagnosis.  When they start talking mental, watch out.  :yikes:

Sad, but my experience is probably the most common for us guys.   old-man/cane

db

LizardKing

Quote from: Barberian on May 24, 2016, 07:49:33 PM

I hope all goes well for you with a quick recovery. Fibro can be a tricky bastage at times.

I've been messed up since 1993 so a "quick recovery" hope died last century over two decades ago....
Past decade was cancer and trying to get that diagnosed and treated.
My original FM diagnosis was pretty lackadaisical to say the least.
Now that I am up to my neck in doctors appts I am going to force a lot more testing.
Frankly having it be MS than FM would be a positive thing in so many ways.

foxgrove

QuoteFrankly having it be MS than FM would be a positive thing in so many ways.

I know what you mean.  I don't think either of us would want the torture or short life that is MS but fibro ain't no ride in the park... it ain't even trip through a torture chamber... so far ain't no THROUGH on this ride.  Hope for better days ahead... no quick recovery likely but better days sure would be helpful and oh so welcome!
Where God leads, His hand always provides
...so keep Calm and code on....

Foxgrove

LizardKing

Quote from: foxgrove on May 29, 2016, 12:34:41 AM
QuoteFrankly having it be MS than FM would be a positive thing in so many ways.

I know what you mean.  I don't think either of us would want the torture or short life that is MS but fibro ain't no ride in the park... it ain't even trip through a torture chamber... so far ain't no THROUGH on this ride.  Hope for better days ahead... no quick recovery likely but better days sure would be helpful and oh so welcome!

Short life?
I haven't read that.
As for torture, I fail to see much difference...

foxgrove

good grief... I must have had something else in my head at the time... You're right, MS patients live about the same length of time as everyone else.  Thanks for the catch Lizard.  :budy:
Where God leads, His hand always provides
...so keep Calm and code on....

Foxgrove

LizardKing

I am getting educated on MS and whatever else I can.
Not a short life for most MS patients though some do die from it.
Since I can not rely on doctors I have to do this myself.
Never had an MRI so the FM diagnosis is not very good, they haven't ruled out MS at all.
Maybe I have a triple play: FM, MS, and cancer.
Some of the new stuff this year is making me think MS so I need to get it checked out.

Barberian

My wife had a few fun tests for her workups for her MS diagnosis. The two "funnest" ones were a needle test to her lower legs. They used a needle and repeatedly stabbed her legs in an irregular timed/location pattern and asking for a response from each jab- ouch, painful, pressure, what? Another test was a spinal tap to test the spinal fluid for a MS marker. I still remember her screaming...

Have you visited any MS forums?

A word of caution I'm sure you are aware of, but I gotta say it anyway - self diagnosis can be a tricky thing. You can find things on the internet that can convince you that you have XXXX quite easily. 

PTSD for example... SOOOOOOooooo many people have convinced themselves they have PTSD because they broke up with a partner, their Gold Fish died, they lost a job, they got evicted, ect... Any of those may be traumatic, but they don't reach the qualifiers for PTSD. Take an internet survey.... YUP!!! They convince themselves they have PTSD.

I am NOT making fun of you on ANY way. I am just urging caution.


LizardKing

Quote from: Barberian on June 26, 2016, 11:06:06 AM
My wife had a few fun tests for her workups for her MS diagnosis. The two "funnest" ones were a needle test to her lower legs. They used a needle and repeatedly stabbed her legs in an irregular timed/location pattern and asking for a response from each jab- ouch, painful, pressure, what? Another test was a spinal tap to test the spinal fluid for a MS marker. I still remember her screaming...

Have you visited any MS forums?

A word of caution I'm sure you are aware of, but I gotta say it anyway - self diagnosis can be a tricky thing. You can find things on the internet that can convince you that you have XXXX quite easily. 

PTSD for example... SOOOOOOooooo many people have convinced themselves they have PTSD because they broke up with a partner, their Gold Fish died, they lost a job, they got evicted, ect... Any of those may be traumatic, but they don't reach the qualifiers for PTSD. Take an internet survey.... YUP!!! They convince themselves they have PTSD.

I am NOT making fun of you on ANY way. I am just urging caution.

Got a brain MRI and have brain lesions, five areas of the brain, saw neurologist who ordered another MS type test and another MRI.
Sooo, it is looking a lot like I do have MS and right now the neurologist gave a DX of demyelinating disease of the CNS, unspecified.
Looking back at the past 23 years I HIGHLY suspect it is MS.
I also had the auditory evoked potential test that showed left ear problems which is consistent with MS.

Shaping up to be the SECOND major disease I have had to diag MYSELF.

My pattern and symptoms fits RRMS that turned into SPMS a few years ago while I had cancer.

Oh, and I have severe central sleep apnea, AHI of 34.
So far the CPAP machine doesn't do all that much for me, but my study shows many MS people have apnea
and central sleep apnea is neurological in nature.

I've done the research, used the lab work to guide me, and drawing conclusions based on all the data.
Now I am trying to get the doctors up to speed...

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