Newby In limbo for 6 yr's very complicated possible ms

[Luvmyflowers]

I would like to first say why i have joined this forum i found it when searching my
symptoms.And you guys are the most informative and curtious site i have found.
And have been lurking and reading your post for several months now, and have
been so helpful when i have a new scary symptom and no one else to talk to that
is going through the same thing that i am.

I  have just turned 50 & have been in limbo with symptoms that i know of for 6 yr's
now. Please excuse my spelling as i am in a bad flair and i spell my words
backwards and all jumbled up another symptom. about 5 yrs back started haveing
dizziness,severe fatigue, numbness back pain & low grade fever. went to dr
he did blood work what i rember my wbc came back elevated and i had  inflamation
shoing up so he diagnosed me with fibromyligia & i had severe knee pain & acheing
all over.

Any way for years after that would get better and the flairs would hit again & last
for a few months and i would get better again. but each time i would have a flair
the symptoms would get worse and last longer and the numbness in feet & legs
would get worser.

To fast forward last june had a severe virtigo attack nocked me to ground went to
dr. he diagnosed me with inter ear gave me antivert and i have been going down
hill since then, my primary dr. sent me to neuro becuse of numbness comming up
legs & tingleing in feet & hands.

That neuro did tilt table test & nerve test  and brain mri with dye in closed machine
all test come back normal except my balance test and one lesion on my brain
in the white matter. he blew it off said 1 lesion was nothing and it wouldent cause
my balance issues and memory prob and weak legs. he was a butt & i didnt go
back to him.

also had a reumatologist he diagnosed me with mctd he did'nt ever know what i
had blood work was positive ana elevated wbc, and inflamation showing up in
blood work,hen i would get so down had to use a cane to walk, fatigue, memory problems
he would give me a steroid shot and steroid to take by mouth and  send me home.

my new reumatologist has diagnosed me with  sogrens, ranuads, poss vasculitus
she has rum tuns of test & blood work & all my lupus & sjogrens , & aurthritus come
back negative. she gave me plaquenil but i couldent take it  made my skin feel on
fire so now my short term memory is shot, bothe legs very numb,cannot keep my balance
face is numb with last flair & it's still not let up any so she put me on low 5mg dose
of predisone it seem to help. but still in the worst flair ever.

my reumatologist dosent know what autoammuine diseases i have overlapping
so she is sending me to a specialist nov 30 2010 all my medical records have
been sent to him. so hopeing he can diagnose me he is a professor at a teaching
hospital on rare automuine disorders.

Also was in church & my hole face,mouth and ears went numb along with legs so
went to er was 4 months ago they checked for stroke, did blood work and cat scan
mri with die and without dr, came back in my room and said no stroke but mri
showed 12 brain lesions involveing the periventricular white matter and also involveing
the frontal and parietal subcortical white matter measureing aprox 4mm and
one lesion high right patietal white matter measureing 5mm in maxium diameter.

Likely repesents a demyelinating process suggested multiple sclerosis. i totaly freaked
out and cryed for days. all this time i was having these flairs what ever this monster is
is totaly destroying my brain and all the other dr's couldent figure it out.

So as of 4 months ago have a new neurologist thanks to a family member that is a r.n.
he has realy been trying to get ot bottom of this and weed out all mimics has run me
through mill & back he has done, emg/nvc ,sep mri with dye on neck, back & brain
eeg tes tand last thur did lumbar puncture with blood work sent to lab for m.s. work up
he's suspecting m.s. or poss sjogrens he says they both mimic each other & is
tryig to figure out whitch one it is. he also suspects maby vasculutus.

My new symptoms as of 2 months ago feels like bugs crawling on my legs & arms
severe muscel spasams, inter body and legs and arms, clod & hot spots on legs
cannot walk without a cane, short term memory very bad, studdering and mixing up
words when im talking, goose bumps going up and down legs, musels twitching
under skin, feet & legs very numb, numb face mouth ears and hands, dropping
things, hand & body tremmors, double and blured vision,

Dizziness, naushua, leg spasticity, leg muscel wasteing, forget what im doing
zapping on my head and cell phone vibrateing in my feet and legs, zapping
when i bend head down go's down in leg. headach pain and bad pain in eyes
when i look left or right. So by symptoms i am so horrified the whole time
i could of had m.s. with lupus or another autoamuine disease and with
my symptoms progressing so fast and getting worse at my age im afraid
it is gonna be in the progressive stage.

I find out results of lumbar punct dec 1st and i am so just wanting to have a name
to this monster i have been through so much , it surley works on your nerves.
sory post so  long but was tryin to give ya a little history so you all can help me
with my questions.

I woud appreciate any input on what you guys think. I  would also like to ask a question
i have been haveing this red scalded look on the top of my hands  also on my
knees,the red color stays never leaves, but when i get in hot water they turn
very bright red also red rash type on stomach and back would that be a symptom
of m.s. you think or ranuads?

Hope you all have a wonderful thanksgiving and a great day. Thank's so much for
listening.

[Luvmyflowers]

Thank you all for your words of encouragement, And help. Was worried since
i still have the old symptoms on top of the new ones and it's been 5 months
that i wouldent get good news by the time im dx'd. Expecialy sence my neuro
told me visit before last he was afraid i had a brain disease and wouldnot
comment on what one. I ask he said well lets get these test done first and
well see. So im trying to keep a hopeful mind.

Thank's wiggles94, Seems like you & i have close to some of the same things
going on.I also have a dermatologist he keeps ck on me gives me my cream
for mouth ulcers and skin. I too was sent to a cardiolgist to ck for blockages.

They did echocardigram heart was ok thank goodness. I have been keeping a
log of symptoms & test for the last 3 yr's, glad i did i never dreamed my short term
and multitasking would get this bad so quick. I  think it's the worst symptom of all.

Wishing you the best of luck on your test and hope you get a good report on your
test.

Shell, Thanks for being so helpful. My husband is going with me to dr. visits to
be an extra ear, lord know's i need extra ears and eyes too. My reumatologist
has gathered all my medical records and test done for the past 3 yrs and faxed
all to new reumy specialist.

New reumy also sent me a 10 page medical history, symptom, and meds list pamplet
that i have filled out to bring with me to appt. I also have my own folder with cd's of
mri's cat scans and symptom logs just incase.This has been a long road  hopeing
to see some light at the end of the tunnel.  
Thank's so much for your help and encouragement.

[sllowe]

Hi there,

Welcome! And, thanks for the nice words you speak about our forum. We pride ourselves on support and good info so I'm so glad you found us. And, I hope we can be helpful to you.

You have some timeline of tests and symptoms so I couldn't be happier to hear you are seeing a specialist who can narrow down the causes for you and review all that's been done.

From what you mention, sounds like at least a couple MS mimics are definitely still on the table for you.  Will someone join you during this appt. next tuesday? To just sit in the background and absorb some info?  I hope so.

My suggestion at this point is to piece out some of this and arrange in a fashion to make it easier for you to explain to the specialist what you are experiencing.

For example:

2005 started having dizziness,severe fatigue, numbness in back pain & low grade fever. Dr (what kind) ran blood tests and ultimately dx'd with fibro.

Yrs to follow had months of feeling but then would have flare (describe what the symptoms were instead of saying flare)

Recently severe vertigo attack Dr. diagnosed me with inter ear prescribed antivert
experiencing numbness legs & tingling in feet & hands.

Tests: List the tests

You can just keep this list for yourself. Since it's been 5-6 years it can be your refresher.

Doc should look into your history and ask you many questions so you don't have to remember it all.

Wishing you a great appt. one where the doc weeds through all this and is willing to work hard on getting to the root of your problems.

Thank you for joining us, and feel free to ask anything. Nxt Tuesday is almost here!

ttys,
Shell

[wiggles94]

Hi and welcome to this site.  

I am so sorry you are going through all of this, but it sounds like your docs are taking you seriously and trying to get to the bottom of it!

I am dx possible MS -and am on disease modifying meds for MS - (am 56) -in the meantime my neuro is running more tests looking for other things - (MRA- wondering about blocked artery that could be causing symptoms).  My neuro has told me that he wants me to make sure that I let my dermatologist know about any skins changes - as he should do a biopsy to test for a vasculitis.  So your changes in your skin should be brought to your docs attention.

I have been going through this since fall 2009 - and this site has been so great for me - (joined last month) -  so I know that this process can be so frustrating and take a long time.  It requires a lot of stamina to keep up with the doctor visits, writing down your symptoms, dealing with the emotional fall out and just feeling like hell!  So this site helps me a lot to keep things in perspective, learn and get some support!  I hope it will help you as well.

[Sumanadevii]

It sounds like you have a good support group with an RN in the family and a neuro that has been running tests.  Did you report the new symptoms to the neuro?  He may need those to show you have had another attack.  My symptoms came and stayed too but it didn't mean it was progressive.  It did mean I hadn't been under the care of a neuro that knew what he was doing.  In other words with no treatment I continued a downward spiral.

Continue working with your neuro and your family member.  Someone is going to find an answer!!