Newly Diagnosed with MS going to Hospital this weekend, have a few ?'s.

[Angiee]

Hello,

My name is Angie, I think awhile ago I may have posted before I had the actual dx of MS.

For about 2 years now I have been seen my many Dr.s who have sent me to other Dr.'s who have sent me to OTHER Dr.'s/Neuro.'s and so on. Many felt I had symptoms of MS and so many MRI's were taken.

I have had severe pain and have developed twitches in my face, little odd ones, such as little nose/nostril twitching, or the corner of my eye twitches. Nothing major just annoying mostly. Then reciently at night I have been having realy apparent twitching, or sompthing else... I'll JUST fall asleep and my hip down to my feet will JERK so fast it jolts me awake. The worst was the other night, when even though my pillow was there supporting my head, it was almost like my body refused to let that stop it, my head lifted up my neck lifted and just fell down onto the pillow, maybe 3 or 4 times, prior to that I had the leg spasm. I was a little alarmed so I grabbed my pillow and came downstairs and asked my hubby to watch me sleep, as I was worried I may be having seizures or something. He says that it happned about 3 times, to him it looked like when someone is sleeping and they "fall" in a dream. That was it.
Well also during these episodes, I have been having trouble seeing correctly, to describe it, its almost like one is drunk, and has to close one eye to see straight or avoid seeing double vision. I have to close my left eye to see no doubles. I can't read, everything is jumbled and out of sorts and I have to concentrate very hard, and even then its impossible. I have fallen going up the stairs many times lately, as I can't tell if I have already went up that stair or if i need to yet put my foot on it to go up it.

I went to my reg. Dr. and told him these new things. He sent me to a new (again) Neurologist, I went in this time fully prepared, I typed all my symptoms down from the computer, very clearly and in order of severity. I took in every single MRI image every x-ray, any notes from privious Dr.s. and before he begain his evaluation, I just cut him off (nicely) and said, excuse me, before we begin would it be okay, if you ready my list i've created for you, and then ask me questions? I think It may help you to get a sense of what I am going through. He agreed that it was a good idea and he did. After he looked through it and read my MRI scans...he finially did what I've been waiting almost 2 years for....he diagnosed me with MS. I was both joyful and depressed and scared all in one instant.

He then said, that he wanted to get me into a hospital as soon as possible, because of the way I am walking and my eyesight. He actually wanted me to go that day, however having children and a job, things can't always go the way we want, so I am going this weekend. He said for me to plan for 3 to 4 days. He is going to inject me with and IV of Avenex (spelling) and start me on another pill (the name escapes me). He say's that the side effects are sometimes bad and he wants to keep and eye on me. ALso, he said he wants to do a lumbar puncture, and also (this is what scares me the most)...he wants to check my spine for any leasions....leasions in the spine? I thought they were only on the brain? I was just so overwhelmed I didn't ask how that would be done, an insision and a scope put in? another MRI? I just dont know, and Ive done reserch online and found nothing...if anyone know's anything please write me and fill me in. (thanks in advance). So here I am today, filled with every medication possible for pain and tremmers, anti inflamatory, muscle relaxers, pain pill's even a morphine patch. I've waited and waited for this Diagnoses, and I thought, if/when I recieed it, with all the reserch I've done I would be okay. However, now im a nervous wreck, and I'll admit to all of you, yes indeed im scared.

I'm sorry this turned out to be so dang long, it just feels good to type it out to people who get it. I hope that I get some advice or comments in return. I thank you in advance.
Besides the few other questions I have asked, how did you feel once you finially got the diagnoses?? How did u cope?? I'm going threw a divorce, and I feel so alone.

Thanks <3
Angie

[KoKo]

Hello Angiee

Sorry you are going through so much right now. Sounds like you are finally getting the medical attention you need.

He said for me to plan for 3 to 4 days. He is going to inject me with and IV of Avenex (spelling) and start me on another pill (the name escapes me). He say's that the side effects are sometimes bad and he wants to keep and eye on me.

I'm thinking that you are going to have an IV steroid treatment, and then begin Avonex which is a DMD (disease modifying drug).

ALso, he said he wants to do a lumbar puncture, and also (this is what scares me the most)...he wants to check my spine for any leasions....leasions in the spine? I thought they were only on the brain? I was just so overwhelmed I didn't ask how that would be done, an insision and a scope put in? another MRI? I just dont know, and Ive done reserch online and found nothing...if anyone know's anything please write me and fill me in.

MS can cause lesions on the brain and spinal cord (the Central Nervous System). I have lesions on both my brain and spinal cord. These were found via spinal MRI. Mine were found when a cervical spine MRI was done (neck area).

Also, don't know if you researched lumbar puncture, but that particular diagnostic test involves the removal of some spinal fluid for analysis.

Besides the few other questions I have asked, how did you feel once you finially got the diagnoses?? How did u cope??

A diagnosis of a chronic illness such as MS can trigger many emotions - fear, sadness, anger, grief,shock. Most of us have felt these at various times, in varying degrees after diagnosis.

I try to cope one day at a time, taking each day as it comes.

I'm going threw a divorce, and I feel so alone.

You are going through an especially rough time, both with your illness and with a divorce. Being able to talk to a counselor, or someone that you can confide in so you are not alone would be helpful. And this site can be beneficial also.

Good luck with your tests and hospital stay, and let us know how you are doing.

Take care,
KoKo

[Angiee]

Please add ur experiences on the &quot;CRAB&quot;s medications.

Oh my gosh you guy's thank you so much for all of this info! I hope more people will post there experiences and or advice. I am driving myself nuts trying to find reserch on "CRAB" and pick threw all the side effects and personal experiences.

Bottom line is: im so afraid of getting any sicker. I do not want a quality of life like I am living now, If I choose a medication that makes me feel worse then I am now, I don't know what I will do. To me the entire reason on choosing to put these chemicals into my body is to help me feel better, not worsen. I have a 10 year old that is very active in sports and im one of thoes mom's that never misses a practice or game, im always on the go with him, I can not imagion not being able to do these things anymore, gosh its already hard enough faking a smile and going with the flow being mentally and physically drained.

I am having a rough time tonight reading and seeing, I think I over did it a little doing so much research so I think its bath and quiet time for me now.

However, I can't get enough info. so please continue to post experiences on what you have taken or take, im taking extencive notes and trying to choose carefully and any help is appriciated.

Many Blessings,
Angiee

[kbloom2]

First of all very big hugs.........I am glad you have come here. This place has helped me in so many ways, the people here are my gosh... they alone are so special.

Before I was dx'd I was promoted to being a dept head at Home Depot was also a key holder (like an acting Manager) this were going great that was FEB 2005. Then in JUN I was walking out of my flipflops and walking like a drunken sailor then it went away.

End of JULY I was losing weight, eye sight was very shaky. Aug I went to my PCP. She asked all kinds of questions and she did one test she said take your left heel put it an inch from your sheen and go down. my lrft foot went all over the place. I could keep it straight and by that she said I think you have MS

She ordered an Mri and that came back saying I have Ms. She referred me to a Neuro and there he did tests, he said I probably have Ms ordered a Lumbar Puncture after came back with Ms as well, it was my birthday when I was dx'd I was 33yrs old.

That aug to dec I declined. I was told I have RRMS, but I couldnt believe it because I declined so very fast REBIF didn't even help. So my general Neuro referred me to a Neuro Specialist that specializes in Ms. I went to see him he did tests and ordered an Mri

He came to me and said my brain is lite up like a xmas tree and I would like to atackk the Ms like it is attacking you stop REBIF and I will start you on a 3day steriod IV at home the on DEC27 I would like you to start a chemo treatment CYTOXIN I was nervous, but I figured I cant feel any worse.

Well at the end of JAN I noticed a huge difference. I was able to transfer myself to the toilet then to the shower chair. CYTOXIN was my miracle med for me I was able to get my life back.

In the beginning I was so into research and reading and learning and reading. I couldnt get enough. I went on NMSS. I becme a member. I was sad angry mad so was my Husband and my 2 older kids, my youngest was 3yrs so she didnt remember me when I was walking normal.

Today will be going on 6yrs AUG 26th on my birthday. I have to say Ms has taught me to try to be more patient and appreciate today, because you never know what tomorrow may bring. I believe you will get your life back to what you want it, it will take some time but you will be able to say ahhhhh.... BIG HUGS you have come to a place that gives support shoulders to cry on hugs to give and advice to share. WELCOME my friend
Kari

[Lexie]

The lumbar puncture was nothing (I did not even feel it) The hard part was lying flat for 4 hours after that. But my short stay room had a tv in it and the time went quickly. Had a slight headache that night and the next day but that's normal for me. So do not be afraid of the lumbar puncture. They have a little machine that points to the exact point they want to put the needle in to draw the fluid so there are no human mistakes. A piece of cake. The leisons in the spinal cord are done found by another MRI which is shorter than the MRI of the brain. Just relax and know we are here for you!