Maybe MS ?

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Maybe MS ?

Postby Siehhra » Fri Mar 27, 2009 5:46 pm

Hi everyone.. Maybe someone can tell me if I am going out of my mind.

Everything started in 17 yrs ago with an Optic Neuritis, OMG having that is scary.. I lost vision and pain in the affected eye, to this day it is still blurry, and still have periphirical problems. I never recovered 100%. After that episode, i did not have any other symptoms, 4 yrs after, my eye started acting up again but that time I didn't get the asscoiated pain, so I went to see an Ophtalmologist who then referred me to a Neurologist. The neuro had me go for an MRI, the result was normal, nothing to be seen. So I went about my daily life. Ever since my optic neuritis, if its gets too hot or my body temp goes up, my vision gets blurrier.. I can't stand hot summer, i get very tired.
After that second episode, I had my second child, after 2 or 3 months after giving birth, my legs started to tingle, it felt like an electrical current going thru my legs all the time and then it stopped, 6 months after that I started getting migraines (never had a headache before in my life) so I went to see my Neuro again, I was then complaining of losing sensation (numbness) in my hands, sharp pain like an electical shock or stabbing to the head, dizzness, and electrical current sensation in my legs, she sent me for my 2nd MRI, that time it showed 2 lesions, so Neuro said it was do to the migraines.
5 yrs after the 2nd MRI, my legs are always getting this feeling (electrical current sensation and weakness), the stabbing pain to my head comes but more prononced in the fall where I can get them more often, numbness of my tongue and hands from time to time and pain in the back of my legs behind the knees, it feels like someone hit the back of my legs (knees) with a baseball bat and it also feels tight, dizzness, burning sensations usually on my sides, lower back pain and numbness of part of my lower face, so after 5 yrs from my 2nd MRI, my Neiro sent me for a 3rd MRI, I got the results a couple of weeks ago and now it is showing several new punctate and also showing my old 2 unchanged lesions. Now they documented my optic neuritis saying it is smaller, etc plus associated with the several new lesions, the radiologist is suggesting demyelinating desease. Now my Neuro wants me to do an MRI of the spin and blood work and she also is referring me to an MS Specialist.. Should I think this is what I have ? Have any of you ever experienced these symptoms?

Thank you for your answers in advance!!
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Postby cheerleader » Fri Mar 27, 2009 6:50 pm

Dear Siehhra-
Deep breath. I know this is a scary time. Everyone here understands. It sounds as though your doc suspects MS. The further tests and appointment with the MS specialist will clarify for you. It sounds like MS to me...but I am not a doctor. Your progression of symptoms are classic MS. But it could turn out to be something else. The not knowing is very hard.

I know this is impossible, but try to be emotionally prepared to get an MS diagnosis. You're a mom, so it's going to be important how you deal with all of this. Get your support network together...friends, family, spouse. There is much you can do with diet, supplements, exercise and attitude. You'll get there. Right now, just breathe.
Let us know how things work out with the additional testing.
Wishing you all the best,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Siehhra » Fri Mar 27, 2009 7:10 pm

Thank you for your support Cheerleader!!

It helps being able to talk about what is going on.. not everyone understands the symptoms, my husband and my 2 boys are very understanding and they help me so much. Deep down I know something is wrong with me and finding out officially if I have MS or if it is something else will certainly help me understand all these symptoms, basically answer all the questions I've been asking myself.

Again thank you and I'm happy to have found this site.. there is so much valuable information.. Keep up the good work!!

Siehhra :)
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Postby scoobyjude » Fri Mar 27, 2009 8:29 pm

Cheer is right. The not knowing is the hardest part to get through. There could be many explanations for your symptoms, it doesn't have to be MS. I think it's a good idea to prepare for the worse but hope for the best. Just try to not let it consume every minute of your day. I know it's easier said then done, believe me. Hang in there.
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Postby Loobie » Sat Mar 28, 2009 9:24 am

I can relate to many of the symptoms you describe. The heat affected ON, the baseball bat to the back of the legs, dizziness, electrical stuff. No one here can diagnose you, but just make sure they don't tell you it's just stress!! It sounds like you're past that, but what you describe sounds very familiar. I just want to wish you the best and also let you know that having an understanding spouse and family is absolutely awesome and will help you no matter what they tell you that you have. So you definitely have that going for you to help with the fear and uncertainty.
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Postby pinpricks » Sat Mar 28, 2009 12:47 pm

I'm in the same battle as you are ... no yet diagnosed. :(
---
I have electric sensations mostly in my legs (look like a brief electric shocks)
Burning sensations mostly in legs and arms.
Migrating pains.
Tingling.
They found 3 years ago some hyper-dence spots but it's not the usual MS pattern ... so they said "don't care"
I'll see the neuro next month and talk to him right in the eyes ...
I started yesterday a gluten free diet, will see. It's relatively easy since there is a lot of place now where you can buy this type of food (just cost more $$$).
I remember having lost my strength on my left leg for 3 days (drop foot) about 20 years ago ... but did not care about it.
So i understand you.
Do you have any other things we don't talk like urgent need to urinate without pain (i got this last year ..), constipation or diarrhoea?

Take care.
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Postby Siehhra » Sat Mar 28, 2009 5:25 pm

You guys are the best.. Thank you for all your replies!!

Pinpricks, I get the urgent need but I had 2 kids (one c-section and 2nd natural) so Blatter is not what it used to be LOL but i do get diarrhea often, my diet is the same as always so I can't explain it.

I hope you get answers after seeing your Neuro. Best of luck!!

I'm seeing alot of comments about nutrition, following an other type of diet helps ??

Again Thank you.. :)
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Postby pinpricks » Sun Mar 29, 2009 12:46 pm

Siehhra wrote:You guys are the best.. Thank you for all your replies!!

Pinpricks, I get the urgent need but I had 2 kids (one c-section and 2nd natural) so Blatter is not what it used to be LOL but i do get diarrhoea often, my diet is the same as always so I can't explain it.

I hope you get answers after seeing your Neuro. Best of luck!!

I'm seeing alot of comments about nutrition, following an other type of diet helps ??

Again Thank you.. :)

Your diarrhoea is with pain or not? do you have urgent need to go to the toilet for this at any time in the day?
I did catch what is called IBS (Irritable Bowel Syndrome) in 1980 ... you can have a look about this. Your bowel problem may be MS or not related.
Stop coffee for some time and see what happens about bowel ...

Take care.
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Postby Siehhra » Wed Apr 01, 2009 7:55 pm

Pinpricks,

Thank you for the information.

I don't think its what you described but I will discuss it with my MD.

Talk to you soon and take care :)

Siehhra
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Postby Siehhra » Thu Apr 09, 2009 3:34 pm

Hi all,

Has any of you who had an ON experienced or is still experiencing lightning flashes (white flash) in the affected eye?

Thank you for your replies

:)
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not sure if it's a new symptom

Postby Siehhra » Fri May 01, 2009 3:05 pm

Hi everyone!

It's been 2 weeks now that I'm not feeling 100%, I'm getting repeatitive numbness on my face and arms/hands, electric current sensation/weakness in my legs, white flashes in my right eye and a weird feeling I've never had before and I was wondering if any of you had this before, in the middle of my back (just at the end of my rib cage) on my spine, I have a pain like a rod is trying to come out (upwards) from my spine and ever since my legs have been at there worst.

Open to any suggestions..

Thank you

Siehhra :)
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Postby peekaboo » Sat May 02, 2009 7:00 am

Siehhra -

I have a girl friend from Highschool that i have kept in touch w/over 30 years. she has ms and has experienced the eye lightning episodes. i emailed your comment to her and she woud like to respond to your posts. Cindy my friend wrote:

I would love to get started on the computer so i could answer her. do people give email address out? and communicate personally? just wondered. ill b getting computer soon i hope! did everything go the way u hoped about ur trip? hope so. love and luck.


will pm her contact info....

Holly
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Postby Siehhra » Sat May 02, 2009 6:44 pm

peekaboo,

Thank you for your kindness.. It's much appreciated.. even tho I have a supporting family, It is hard for me to share some of the pains or worries I get.. They do understand but have no ideal what I or other people have to deal with MS.. I'm glad to have found this site, it has given me answers to ALOT of questions I had, I can honestly say that I find relief in many stories I have read or replies I got from my and other posts..

I am looking forward in hearing from your friend.

Again Thank you!!

Siehhra :D
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