What were your very first signs of MS?

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Evanescent Eden
Regular Member

Date Joined Feb 2014
Total Posts : 132
   Posted 2/23/2014 5:14 PM (GMT -6)   
Hi, again. I've been bouncing around a couple different forums trying to see where I "fit in" the most. I'm very sorry if this subject has been addressed on this forum prior to this- but please, if anyone feels up to it- can you tell me, what were your very first signs of MS?

And does it run in your family? No one in my family has ever had MS, from what I know.

What is your level of pain overall? If you have any?

In case you didn't read my first post here, I've had Fibromyalgia for a long time now. I'm 26. Doctors have agreed in the past 2 yrs or so that I have severe autoimmune disease symptoms on top of it. I had ONE MRI ever, which was 3 yrs ago when I still had health insurance. That is all that was ever performed for me, and at the time, it was clear of MS. No further testing.

But I have many odd neurological symptoms that still stick even after all of this time: to name only a few: Nystagmus (my eyes jerk back & forth on their own), facial pins & needles/ numbness only on one side (under eye) that comes & goes, blurred vision that comes & goes, other odd vision disturbances (was DX ocular migraines), severe numbness in the legs that waxes & wanes, balance trouble, severe day-long bouts of vertigo (mostly in the past *knock on wood*), very frequent urination, some mild bladder incontinence, inability to think clearly, terrible muscle spasms, and even sexual arousal problems as of the past few months. I'm only 26 but I have lost my sex drive completely it seems (which is very unlike me! lol)! At times, I also get odd sensations on the top of my head, like a severe tingling, and I get internal tremble feelings inside of me.

Just weird, strange things here and there. At some point, I also need my B-12 levels checked I know because that can affect nerves too, as well as my thyroid.

But please, your answers may really help me out! Thanks a bunch!

Eden :-)

ppm guy
Veteran Member

Date Joined Apr 2010
Total Posts : 1226
   Posted 2/23/2014 6:48 PM (GMT -6)   
hi eden, my 1st sign was loss of strength in my left hand and arm, back in 1985. slow progression since then. my twin does not have ms, and my 3 kids are unaffected. it will be interesting to see if my grandkids are affected. the only pain i get from ms is spasms that are excruciating and PN. pain i need to treat on a daily basis from ms are shooting pain from my neck out to my shoulder from bulging disc at c-5, and ischial bursitis from spasms in my hips and legs. they are not from ms, but are because i fall and have spasms because of ms.

with the numerous symptoms you describe, and clean mri recently, i hope your never have to deal with ms.

Evanescent Eden
Regular Member

Date Joined Feb 2014
Total Posts : 132
   Posted 2/23/2014 7:12 PM (GMT -6)   
Thank you for your reply & kind words, too!!

Who knows, with me, there could be a number of things going on! I think I may relate mostly to RA and/or Sjogren's syndrome (common with Fibro). It's just strange that I have so many very odd neurological symptoms that wax & wane, but never truly go away.

I'm so sorry to hear that you have had falls. I, too, have experienced falls that left me pretty injured. I feel for you. Yours were probably worse.

I, too, hope it is not MS on my part. The nystagmus is mostly what worries me. I know it is common among MS people. I know it could have to do with the vestibular system though too (the inner ear).

I just hope i get some answers soon. It sucks being poor AND sickly! My quality of life has been destroyed.

That's interesting that your twin does not have MS! Thanks again for taking the time to read & reply! I hope you're feeling well tonight!

Eden :-)

Veteran Member

Date Joined Jan 2014
Total Posts : 993
   Posted 3/14/2014 11:10 PM (GMT -6)   
What have you been tested for? Anything other than MS?
Excuse typos and or spelling and grammatical errors. I try to proofread, it's hard right now. Believed to be infected at least 28 yrs, dx 2012. Kiddos with congenital lyme. I am a nurse but a sick stay at home mom currently.

Evanescent Eden
Regular Member

Date Joined Feb 2014
Total Posts : 132
   Posted 3/15/2014 10:39 PM (GMT -6)   

I have been struggling with keeping health insurance for nearly 5 yrs now- ever since my ex-husband and I split up... I had state assistance (AmeriHealth Mercy) years back when I became "pregnant"...it was actually gestational trophoblastic disease ( a false pregnancy- sperm hit a defected egg), which required surgery. Anyway, the next yr after that I took advantage of still having insurance, and my doc had ordered an MRI for me when the involuntary eye movements, "jelly" legs, vertigo and odd vision disturbances were very bad. It was clear of MS for the time being, but that is all they checked me for. I was supposed to get another MRI the following yr if the symptoms remained. The state took my insurance away once they realized I had never had a baby, even though my doc wrote them a letter about how badly I needed it for myselfshakehead.

So to answer your question... I have barely been tested for anything. Blood work always showed up normal they would say, whenever they would do that, although never any extensive testing (and from now on, I know to get my own results for my own records-- which I never did). No spinal taps, etc. I've barely been checked for anything.

I have had all of the fibromyalgia tender points for nearly 8 yrs now along with severe widespread pain in every nook and cranny of my body, so that's the main DX I have had.

But the neurological symptoms I still get are very troubling. And I need a wheelchair at times just to get around a grocery store because of the pain. Any suggestions?

A woman at the welfare office has been finally trying to get a hold of me though... we keep missing each other... but she was going over my case, and hopefully she will be able to help me soon!!!!

Eden :-)
DX: Fibro, IBS, GERD, Daily headache, Migraine, Severe allergies, Bladder diverticulum, Mild kidney damage, Recurrent infections, Sinusitis. Bipolar Disorder, Borderline Personality, OCD / Dermatillomania. In the past: Gestational Trophoblastic Disease. + Undiagnosed issues; searching for the answers.

"You can't be brave if you've only had wonderful things happen to you" Mary Tyler Moore
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