I'm BACK ... 2 years later...

Hello everyone!  
   I actually joined this group about 2 years ago when my first symptoms came about.    I'll recap my history and what is going on.
  In May of 07, 2 months after delivering my daughter I began having strange symptoms.  It started with a numbness in my feet and toes (felt like I had something stuck between my toes), also had shooting pains in arms to hands (felt like hitting funny bone), pins and needles in hands and feet, altered sensations in legs (felt like liquid running down my leg), occassional cold/numb patches on face and body twitching.  Saw a neuro and my neuro exam was normal.  Also had an MRI of brain with contrast that was normal.  Eventually all my symptoms just vanished.  I was so happy and I just left it at that.  Didn't really think much of it until now... 2 years later.   My symptoms are back and worse this time.  It started with some numbness in my toes on the left side for a few days.  Then the dizziness feeling (like I'm rocking in a boat), body fatigue, heaviness in limbs, muscle twitching, brain foggy, pins and needles in feet and hands, feel off balanced and very tense.   These symptoms have been here about two weeks now and I feel horrible.  I have no energy and feel like I have a horrible flu.  The numbness isn't complete numbness and it isn't always there.  The dizziness isn't alway there either.  My symptoms fluctuate up and down.  One moment I'll feel half way normal and then instantly I feel horrible.  It's like a rollercoaster.  I saw a neuro yesterday.  My neuro exam was normal except for having somewhat brisk reflexes.  I also had an MRI of Brain and Cspine with and without contrast, a CT of brain and Cspine and xray of spine.  I am freaking out!  I feel absolutely horrible.  I'm so emotional and all I can do is cry.  I just want to feel normal again.  We are currently living overseas in England due to my husband being in the navy.  I have two children ages 2 and 5, and I feel like a horrible mom right now.  I'm so scared of what the results will reveal and for the future.  I don't want to feel like this forever.
  Does this sound like MS?  Please help me.
  Karey

[skarey]

I forgot to mention that I keep getting this weird feeling in my mouth/tongue/throat like it's burning or numb.  Also, I had the NCS done yesterday as well that was normal.  What is going on with me???   HELP PLEASE!!!

[skarey]

Bumpin it up!

[uk2]

Hi i joined 2 yrs ago too in jan 2007 i think or it might have been May 2007 as that was when i had my first attack anyway i thought i had reached a dx Jan 2008 when a dr said i had fibro but since then i have had attack after attack and as my tests were all done before my first attack in May 2007 i am being retested for MS or anything else.

I am sorry you are going through this again. I live in the UK with my 3 girls i am a singal mum and am disabled as such and reley on a wheelchair when out ans sticks.

I get this on off sx you describe and many on here do too. some dx some not.

How long ago did you have the brain/spine with contrast have you got the results yet??

did you have your first MRI before or after your first sx? was there any dx from that or did you not bother to follow it up as your sx went away.

i am sure others will comment on the post soon.

sam

[skarey]

I had the brain and cspine mri yesterday.  I called and she had the results of the cspine and it came back normal.  Also the xray showed degeneration on my spine (possibly arthritis), and she said there was a small cyst/mass (very small) in my jaw.  I am happy the spine mri was normal though.  I'm still waiting for the brain mri and ct scan results.
  
  When I had my first brain MRI in 2007 it was during my symptoms.  It didn't show any evidence of a demyleiating disease, BUT did show severe sinus disease.  This took me by suprise cause have no sinus symptoms.  I was supposed to have sinus surgery, but haven't yet.  Could this sinus disease be causing neurological problems?  I know my aunt was having neuro symptoms such as numb leg (foot drop) spasms, and pins and needles.  She ended up having sinus surgery and her neuro symptoms went away to never return.  Very intersting to me.  But when I brought it up with my neuro yesterday she didnt' think it would be related.

  I look forward to hearing what others have to say!

[uk2]

Hi

I thought my pressure behind the eyes and vertigo was down to sinus issues and the inner ear as i had an xray that showed impacted sinuses but as it was when they took the CT scan it was all normal so he put the damage down to central having another mRI with contrast just to make sure its not the inner ear.

I have to say MRI can make a big deal out of sinuses but then i dont know alot about this were you refered to an ENT?? why did you not have the surgery??

I have never heard of sinues disease casuing foot drop before or neuro issues other then those of the face and eyes and dizzyiness and fatiuge in the muscles i have heard of but not numbness in limbs and spasms i have never heard this.

It is good your spine was clear and normal, do you get pain when having these flares? or tired i was thinking maybe M.E or fibro or are you under any stress when experiencing these sx is their a link to when you had it last time from now??

I am pleased they were straight on to doing all the tests and it may well be MS even if the MRI are clear they may want to do a LP.

anyway take care, oh are you private or NHS?? i am NHS and everything takes so long but i am blessed i do get seen.

sam

[ChunkyMonkeysMommy]

I see that you had a brain and C-spine MRI, what about your thoracic spine? Why did they not do an MRI of it? That's where my lesion was, on my thoracic spine. I would ask! Seems silly to me, if they're looking for MS and doing an MRI of your brain and C-spine anyway, why wouldn't they go ahead and do it all?

[ChunkyMonkeysMommy]

Also, see the "Health Pages" in the upper right hand corner of the screen. It may make a difference what machine they do your MRI on. If possible, have it done on a 3T machine!

[skarey]

Hey..
  My neuro called this afternoon and both MRI of Brain and Cspine came back normal.  It showed no evidence of Neurological disorder or demeylieating disease. I asked if it was possible that it could just not be showing up.  She said possible yes, but not very  at all.  Especially being that I first started showing symptoms 2 years ago.  She believed within that time frame something would show up.  Also my NCS was normal. She also said the MRI talked about my severe chronic sinus disease.  So my neuro said based on her medical exam, neurological exam, and MRI's with and without contrast that I do not have MS.  Next step she said would to see an ENT for the sinus issues and possibly a Rheumtologist if symptoms persist.  
  I'm happy about the results of the tests, but also still wondering what is causing me to feel so crappy.  
  Anyways just wanted to let you all know.  Thanks!

[uk2]

I guess as they have re run all the tests and they have been doing this over 2 yrs that something would of shown but thats not always the case. It could be that you have chronic sinuses infection and i know this disorder can cause fatiuge in yourself and heavy muscles so maybe the other sx are stress but if your happy to leave it and she is following up with an ENT i am sure he will get to the bottom of this and a rheumy might dx M.E or something connected to your sinues disease.

good luck and keep us informed.

sam

[skarey]

Thanks Sam... I hope that my neuro is right.   I'm still worried about it... what if??   I know I should be happy and move on, but still in the back of my mind I still feel it could be MS.  Am I just over reacting??    I just feel that all my sx are definately neurological.  Especially the numbness, tingling, and twitching.   My reflexes were hyper and I feel like my nerves are going bazerk!  I'm real jumpy and sensitive to loud sounds too.    Weird stuff....
   What is ME?  
  thanks

[skarey]

What is ME?

[uk2]

You call it CFS chronic fatiuge symdrome we call it M.E and i cant spell what that stands for.

It is a disorder that can come from estein barr virus and mono virus or without rhyme or reason. It causes fatiuge in your body you are really tired. you get heart paltatations,insensitive from medications, headaches,flu like feeling,just want to sleep all the time.

fibromyalgia is another condition that cause wide spread pain and causes simular sx to MS but is not generative disorder and both have no clinical test they are dx on sx alone though fibromyalgia has a tender point test and if 11 out of 18 points are found they say you have it a rheumy can dx fibromyalgia i'm not sure about CFS a GP or DR can. With fibro you get nerve pain twitching muscles but dont get spasms and eye problems or intolrance to heat that make sx worst but get sensitive skin mirgraines,shoulder,hip and back pain are common and you cant sleep well either, you get like a brain fog too where things are just fuzzy this comes in flares ans inbetween you are almost normal but it does have a really bad effect on some and others mange to work with it and lead a normal life.

your rheumy can tell you all this, i just feel as you get flares of it and dont have heat intolrance or eye problems this maybe it but i am no dr they said i had it a yr ago but i am not sure nor are 3 drs so back being re tested for MS as tests two yrs ago now.

I get heat intolrance and eye pressure problems and have gone constantly down hill it has been proven by my ENT my vertigo is not the inner ear and the pressure behind my eyes is not sinus problems so it has to be central.

good luck and keep us informed how you are feeling.

sam