what else is like MS?

[myshoeisonfire]

so Ive been around this forum quite a bit, and can relate to almost everyone's experiences...

ive had MS like symptoms ALL my life.. even back into childhood, I can remember things that weren't normal

over the last 7 years ive had several MRI's and last week as well.. ALL of them are negative
all my blood work is normal..
I havent been able to get anyone to do an LP... my neurologist today said an LP is pointless without some other data to go along with it...
he also said there's no way I have MS.. despite all the symptoms and similarities (over 30 of them now)

in the last week, ive started having issues with urinary incontinence.. as soon as I realize its happening, I can stop it easily.. but the urge to goto the bathroom comes up very suddenly, I dont realize it till its to late!
I also have within the last month started having weird pains and numbness in the groin area.. these things have me worried... as well as my mobility issues..

I am just trying to find out what else out there can yield a negative MRI of brain and spine, and be so similar to MS?

any ideas?  I have been referred to a urologist.. I guess ill see what happens there..
and ive been to SEVERAL psychologists to make sure its not a "mental" thing.. and they all say (after their workup) the referring doctors need to get THEIR heads checked if they think physiological problems are to blame in my case!

its just so weird.. everyone ive ever talked to with MS, or chatted with online i TOTALLY can relate with!!
I even get the "MS HUG" when exposed to heat! and hot showers in the morning make tremors in my arms and hands really bad!... and extended periods in heat make my hands itch so bad i want to rip my skin off!
same with working out or exercising.. all the symptoms get worse!

anyways.. I'm in the Portland, OR area any advice, or resources anyone can think of?

thanks!

-Dan

[myshoeisonfire]

thanks~! yea I'm looking for any options... ill do some more checking into that...

thanks for the info!!!

-Dan

[MarisaV]

I hope no one is offended if I comment, since I don't have MS, but do have Systemic Lupus.

Its really difficult to say what could be causing all this... and whether or not its just one thing or a series of unrelated things.

I have migraines, and its quite common for them to cause the left side of my face and neck to go numb, and for my tongue to go numb as well. So what you experienced could have been due to migraines.

It's also possible that some of your symptoms could be some form of seizure complex.

I've experienced myoclonic seizures before, and they cause all sorts of involuntary movements. I literally looked like I was possessed. Arms and legs jerking and feeling like I was being zapped by electricity.  Baring my teeth. sit-up like movements, Arms waving overhead like a chimpanzee... then dropping suddenly like a puppet with its strings cut.

Systemic Lupus can cause all sorts of neuropsych issues (and does for me): Cognitive fog, dizziness, difficulty understanding things (I've even had things I've written, all of a sudden look like Russian script... all backwards looking), MS-Hug like feeling around lower ribs, neuropathic pains, bizarre ice-cold patches on my legs or arms, etc.

And of course, Systemic Lupus causes the typical joint and muscles pains, weaknesses, and spasms

Now, I'm not saying you have Lupus, just mentioning another possibility, and why its so hard to diagnose you. There are so many possibilities. And, of course, the Doctors already have another scapegoat to blame... your Tourettes.

I've probably had Lupus for at least 20 years, and was only recently diagnosed with it. It took them three years to diagnose it, with me going back every other month and being a gadfly with a flamethrower... all my Doctors wanted to do was dismiss me, and take the easy way out.

Autoimmune diseases, for instance, are notoriously hard to diagnose. They relapse and remit. Have bizarre symptoms. Blood tests are inconsistent in diagnosing them (not that Doctors will always admit that), and you just have to fortunate to have them done at the right time.

All I can say, is do as much research as you can. Keep going back to your doctors, and don't let them off the hook.

Hope this helps somewhat.

Mar

[myshoeisonfire]

all in all, I really didnt have any actual symptoms till 2005...  i mentioned that in childhood i had issues... but I think those are relates to some spine issues.. arthritis etc...or who knows! things happen sometimes for no reason!!

who knows.. this may all be spine related!!  ive for wedged vertebrae, several curves, and several schmurls nodes.. facet joint degeration...

ive had doctors tell me this can be cause of things, and other tell me none of it is a problem at all...

i guess if things were too simple, life would be boring!!!

and honestly, since ive had to start using a (prescribed) wheelchair, I'm more active than I ever was before!!

im sure things will get figured out eventually... im going to see a urologist nest week... hopefully that will yield some more actual evidence of documentable things that are wrong..

[myshoeisonfire]

so, after speaking with a disability services doctor, I think i may have found out why some doctors don't want to help me..

they see that I have tourettes syndrome, and have had a mild electric shock, then assume that's all thats going on.  

"well tourettes causes movements that are involuntary"  yes.. but not tremors and everything else thats going on..

its hard to explain.. but I know what involuntary movements are caused by the tourettes..  the tourettes "makes me decide " to move, and I cant stop it.. its almost like decision interference.. but I am still in control.. just not able to decide not to make the involuntary movement...

whereas the tremors, and other symptoms im having are totally without my knowledge, and almost like my brain isn't involved at all.

its hard to explain this to neurologists.. they assume I don't know the difference.. but I do..

the tics (symptoms) from the tourettes also have a motive...they happen randomly, but there is a motive, or a goal to the movements..I have to make weird noises, or move my head, or neck a certain way till "it feels right" then it stops.

then the electric shock... apparently it wasn't severe enough to cause any damage on its own... BUT my guess is, if I have issues with my nerves (MS) already, it might just aggravate the symptoms!!??

Thats just my guess...

but yea.. those 2 items seem to make doctors shut down, and dismiss everything im saying for some reason because "I don't know my own body"

Tourettes is one of those things that looks one way on paper, but in reality is WAY different then people from the outside realize.  

BUT i am still in search of a doctor that's willing to LISTEN to me, and actually BELIEVE what im saying, because after all, I DO KNOW my own body pretty well!! :^)

[supermum_ms]

Childhood could fit in with dx of migraine, may not even be relivant though unless migraines are still a big issue.

2005 sounds like a TIA (mini stroke often dont leave MRI evidence) or Bells palsy.

2009 sounds like you were electrocuted - um hello, why isn't this one being looked at as being related?  

Have you by any chance ever been tested for epilepsy? What medication do you take? What happened re-migraine dx?

I really dont think your looking at MS, the what exactly maybe an accumilation of things, one begets the other type of thing.

CHeers.........JJ

[myshoeisonfire]

its weird though.. after the initial numbness. things just keep changing...

before all this.. things were "normal" as far no numbness etc...

sitting here on my couch, typing this, I got up a minute ago to go into kitchen.. and tongue numbness came back.. and when i lie down to sleep, random limbs will go numb.. look thru my other posts to see all the other stuff...

I have moments of confusion, I cant remember peoples names ive known for years(takes a min to think hard of their name before it comes back) and im super sensitive to fluorescent lighting as well..

and cant multi-task at all anymore

but sometimes ill be totally fine for a few hours!!

[myshoeisonfire]

im open to anything!
well back into childhood it was mostly muscle pain, joint pain, stiffness, dizziness, headache / migraines

everything seemed totally fine till 2005 when I suddenly had my right ring, and pinky fingers go partially numb, as well as right half of face, and entire tongue.  that's what started it all.  went to ER, and its the first time I heard "might be MS"

then a few years later (2009), I got an electric shock from 120 volts across the chest... and next morning I couldn't walk..had to re-learn how to walk using conscious thought, and a cane.

everything's been downhill from there.. lots of EMG's EEG's MRI's blood work, biopsy's, evoked potential tests you name it..

the last EMG I had was 6 months ago.. and after the test, I had no use at all of my right leg below the knee for 3 hours!! couldn't move it at all!! then it slowly came back after the third hour...

so who knows... the doctors all say "we don't know where to send you"

ill see if I can find the mimics pages... and root thru there for similarities!!

thanks!

[supermum_ms]

Resent because the last time it disapeared lol

Dan have you looked at our heath pages yet? Start with MS mimics part 1, though i feel i must point out that it would be highly unlikely for you to have MS after 7 years and still have no clinical evidence of nuerological causation or even lesions in the expected areas on your repeat MRI's.

So i'm thinking it is more likely one of the many mimics, going back to childhood would be kind of odd though. Dont shoot me, but could you possibly be talking sensory type sx from childhood? If you are, it makes me (lol with my family you'd guess why) think of sensory intergration dysfunction, this give a basic over view of SID but there is heaps online.

http://en.wikipedia.org/wiki/Sensory_integration

Cheers........JJ