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Old 01-17-2010, 12:23 AM   #1
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My experiance with MS

I was diagnosed 2 years ago with MS. It was a really frustrating process. I went through JOB after job and couldnt figure out WHY!!!
The funny thing is...I thought I was doing good. Yet every time I was pulled into the office and let go..they said the same thing!! "You arent catching on fast enough"
I began to think that there was a cospiracy going on and everyone was out to get me.
I only then started realizing "WAIT a second...something IS wrong with me!! "
It started when I was actually off work looking for a job. I would go in for interviews and not be able to talk right. My tongue would jump and noise would accompany that tongue movement that I DIDNT put there.
I would suffer from headaches and pain behind my eyes all day for days straight with no relief from any pain meds. I was given Vicodin by the emergency room for a continuing headache because they couldnt decide what was wrong.
I know that I am rambling but thats how confused and scared I started to feel when I started to realze something wasnt right.
So...I went to MANY doctors but had no insurance so of coarse I dont feel that I was taken seriously. Until one day ( A year into my troubles ) I went to A doctor who REALLY listened to me. I told him all my troubles....
-Sharp pains in my head accompanied by flashes of dizziness
-my tongue spazming out of control
-pain behind my eyes
-Sooo tired all the time
-muscle spasms that where rediculouse at times

Thats all it took....he said...I do believe you have Multiple Sclerosis.
I was in shock...But I had looked up what I was experiancing and thats always what came up...MS!
So he sent me to a Neourologist and an MRI was done. That showed 1 lesion.
So when I was called into the office for the results I was told that the lesion may have been caused by a fall when I was a baby ( I had fallen in a walker down a flight of stairs and had a bad head injury ) anyway..the doctor said that it may just be scar in my head. He didnt want to do a spinal tap as he said that it would be painfull....it was up to me...so I said Ill wait.
He made an appointment for a year later and I had my second MRI...which turned up 5 lesions.
at this point he asked me to go for a spinal tap....two weeks later the results showed that I in fact DID have MS.
So now two years later I am on 44 mcg of Rebif and I am still kinda scared because it seems I am getting worse.
I now have so many muscles spazming all over my body all day.
I cant look in a mirror because it looks like steam rising from the road on a hot day.
I have a hard time looking down sometimes because of this same affect...blurry....wobbly kinda vision.
I eat and by the time I am done my mouth,throat,lips and tongue are numb.
If I talk for long periods of time on the phone it goes numb also.
I get pain through my legs and arms somedays so bad that it feels like they are broken.and it stays with that same dull ache for hours at a clip.
My left arm and hand just buzz all the time.
I have difficulty breathing at night when I lay down.
I cant concentrate and I cant remember even the most simple things!!
I will sit for minutes just blank...because I lose track of myself and what I was doing. I cant remember anything!
When I wash dishes or cut my boyfriends hair I feel like electric shocks are going through my fingers...but only when I bump them in a certain spot.
My feet get icey cold and then they burn almost immediately after the cold.
I was told that once I started my rebif that It would make it so it would not get worse....and yet here I am....worse. I was just wondering...does this mean that the rebif isnt working?
Do I possibly have a different form of MS?? Maybe I need something stronger?
I have my next appointment on the 25th. I havent seen my doctor in a year because I dont have insurance and I have HUGE hospital bills!!
Can some of you please tell me some of your experiances with MS??
Thank you,
Leah

 
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Old 01-17-2010, 06:47 AM   #2
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MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Ill Tell My experiance with MS...what is yours??

Hi Leah. Could you have something else going on?.....I have over 50 lesions on my brain, also take Rebif 44 mcgs (have for 4 years) and have quite a few of the same symtoms that you have....however, I function better then you describe. Although I trip over my words now and then, and have a little bit of cog fog- I manage. I work 50+ hours a week, raise a family and am going to college for my doctorate degree. I am quite aware that where the placement of the lesions are in the brain can affect the disease, however 5 lesions is practically none- most MS patients cant count the number they have in their brain....they all start jumbling together! So, try not to think of 5 as allot- thats very few in the grand scheme of things...youll psych yourself into anxiety attacks if you truly believe that 5 lesions is the end of the world.

A Spinal Tap is not a definative dx for MS by the way, its simply a tool which states that you have the Obands, which can point towards a autoimmune disease, it cannot tell you that you have MS. Rebif, obviously isnt supposed to get rid of your symtoms, but to stop progression of new ones. Its also very important that in the first year, you get blood work drawn every few months...are you doing that?

You absolutely need another MRi, call the local MS society and talk to them about what you are facing financially...they can help you with that. You asked about something stronger. There are only 4 drugs on the market which are injectables and approved for MS. Youre on the strongest one of all. The next step would be Tysabri, which might be where you are headed; however you really cant begin to figure that out without a doctors thoughts. Tysabri is given in the hospital, at an infusion center and requires MUCH follow up and blood work.

Please take care of yourself, I can hear the anxiety in your post and that wont help MS symtoms...
N
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RRMS- dx 05

Last edited by MSNik; 01-17-2010 at 06:49 AM.

 
Old 01-17-2010, 05:38 PM   #3
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Re: Ill Tell My experiance with MS...what is yours??

If you do have MS, your job in-ability could very well be cognitive problems. I was a General Manager for a Japanese company until finally having to take disability. The last month on the job was a complete fog and daily decision making was a problem.

If your testing has determined MS and you cannot hold a job, perhaps disability is your best choice. If you have MS, you might need to take a break for a year or two and see whether you can cycle back to a normalcy with which you are familiar. My first two years of MS impacted my life until I learned to live with what I had and could function again. I enjoyed 20 good, blessed years.

There is no one, single test for MS. Your doctor, if MS is suspected, should follow the McDonald Criteria. If you familiarize yourself with the criteria, you can assume a proactive, control over the process.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 01-18-2010, 05:37 AM   #4
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lhmazeika HB User
Re: Ill Tell My experiance with MS...what is yours??

Quote:
Originally Posted by MSNik View Post
Hi Leah. Could you have something else going on?.....I have over 50 lesions on my brain, also take Rebif 44 mcgs (have for 4 years) and have quite a few of the same symtoms that you have....however, I function better then you describe. Although I trip over my words now and then, and have a little bit of cog fog- I manage. I work 50+ hours a week, raise a family and am going to college for my doctorate degree. I am quite aware that where the placement of the lesions are in the brain can affect the disease, however 5 lesions is practically none- most MS patients cant count the number they have in their brain....they all start jumbling together! So, try not to think of 5 as allot- thats very few in the grand scheme of things...youll psych yourself into anxiety attacks if you truly believe that 5 lesions is the end of the world.

A Spinal Tap is not a definative dx for MS by the way, its simply a tool which states that you have the Obands, which can point towards a autoimmune disease, it cannot tell you that you have MS. Rebif, obviously isnt supposed to get rid of your symtoms, but to stop progression of new ones. Its also very important that in the first year, you get blood work drawn every few months...are you doing that?

You absolutely need another MRi, call the local MS society and talk to them about what you are facing financially...they can help you with that. You asked about something stronger. There are only 4 drugs on the market which are injectables and approved for MS. Youre on the strongest one of all. The next step would be Tysabri, which might be where you are headed; however you really cant begin to figure that out without a doctors thoughts. Tysabri is given in the hospital, at an infusion center and requires MUCH follow up and blood work.

Please take care of yourself, I can hear the anxiety in your post and that wont help MS symtoms...
N
LOL....No I had a spinal tap...besides ,as for the lesion thing...I havent had an MRI in 2 years!!! So I wouldnt know how many lesions I have at this point in my life.
I have no medical insurance and my lifestyle (STRESSFULL ) is less then to be desired for sure!! I stress every day how to get away and go back to live with my family. That may help me a lot!!
But as for Lesions..Im sure they are as you said...in very high count as of now.
Ill try to keep posting..like I said I have an appointment soon and I will ask for another MRI.
Thanks for responding

 
Old 01-18-2010, 05:41 AM   #5
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lhmazeika HB User
Re: Ill Tell My experiance with MS...what is yours??

I have had bloodwork done...first at 1 month for three months straight..then 3 months later. All was well. I think that a lot of my problems as to why it is getting worse is my stress level. I dont like where Im at in life and I need a change FAST!!
Ill keep posting with updates
Thank you

 
Old 01-18-2010, 10:44 AM   #6
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Re: Ill Tell My experiance with MS...what is yours??

Sweetie, Im not going to lecture you on reducing stress- Id be a bad example! I have an extremely high pressure job, i needy husband who is unemployed due to heath problems and 3 kids....I get it!
So instead, Ill just say, find some YOU time.... time to exercise, or get your nails done, or even just a drink out with a buddy- do something for yourself now and then or else youll find yourself in worse shape! Im glad to hear you got blood work done at least a few times, its most important in the beginning for sure...and that youre headed towards another MRi. Just keep postitive. This stinking disease is only as hard as we make it for the most part. Keep using your brain and working on cog issues- there are a ton of brain teasers available which will help stimulate parts of your brain that you need stimulated- and try more then anything to do some light exercises...even just stretching is recommended.
I wish you well.
Nikki
__________________
RRMS- dx 05

 
Old 01-18-2010, 01:08 PM   #7
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Re: Ill Tell My experiance with MS...what is yours??

Quote:
Originally Posted by lhmazeika View Post
LOL....No I had a spinal tap...besides ,as for the lesion thing...I havent had an MRI in 2 years!!! So I wouldnt know how many lesions I have at this point in my life.
I have no medical insurance and my lifestyle (STRESSFULL ) is less then to be desired for sure!! I stress every day how to get away and go back to live with my family. That may help me a lot!!
But as for Lesions..Im sure they are as you said...in very high count as of now.
Ill try to keep posting..like I said I have an appointment soon and I will ask for another MRI.
Thanks for responding
Because it has been at least two years since your previous MRI, the MS Association has MRI assistance available. You can contact them to fill out the assistance forms.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
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