I finally have my answer
 

I went to the MS clinic here in my state yesterday. After about 5 years of off and on problems I was diagnosed with MS yesterday. :(
I am not happy with the dx but am glad to know what is going on, and that I am not crazy. :D
Five years ago I started to have eye pain and visual changes. Numbness in my right foot. Had an MRI and it was clean. Had an EMG done. It showed Carpal Tunnel in my left hand. But, I do not have any sypmtoms of CT. :confused:
I went a couple of years with nothing then I was hit hard with Trigeminal Neuralgia. I thought maybe it was a tooth so I declined going on treatment. I had pretty constant facial and head pain during that time. Only it was tolerable. Then I had another flair of TN pain and decided to get my tooth looked at. I had a tooth pulled thinking that was the problem. Hoping pulling it would take care of my problem. It didn't, I still have mild TN pain. Then in May of this past year I developed Optic Neuritis. Went for all of the MS tests this time.
Brain MRI showed ON and area of demyelenation. Although the area was not in the "typical" MS area. I saw two different neurologists. One said the area was migrane or caused by high bp. The other said migraine stressed caused by my 7 children. :confused::eek::mad: Crazy woman!!
I gave up at that point. Went on. Had another test in September to see how my eye was doing. Things were improving. January 2008. Eye pain started again. Went to eye doctor have vision field test. It was now worse than with the first bout of ON. They claim to have seen pallar this time.
Went for MRI. Confirmed ON again. I finally got into the MS clinic yesterday. I took all of my tests. MRI's, BAER,SSER, VER, blood work, eye exams, letter from my PCP..
Two MS specialists went through all of my paper work before they saw me. They had their minds made up even before they did my exam. They said I am in the early stages of MS. :( They want me to start Avonex in the next couple of weeks. They started me on Trileptal for face pain. I have to go for a T-spine MRI in two weeks.
So, combined with all of my tests, history, and exam I did leave finally knowing what is going on. I am not happy, but at least I know now. Being in LImbo is very difficult. I feel bad for all of you who are still trying to get help. :(


LA

First of all, if I haven't already Welcomed you to NT, please let me say right now that I'm glad you are here. But, sorry about your DX, but at least you know what's been causing your problems.

Good luck starting the Avonex and take care.....

La,

I'm sorry that you were dx with MS, but you know what

I'M GLAD YOU FOUND US!!! :hug:

Knowing you have MS is a sobering bit of knowledge, but please know that you are in really good hands here with us.

Hugs to you LA.:hug:

Receiving a diagnosis of anything bad is a shock. Having your suspicions of many years finally heard and seen is a relief, but it puts the same stress on your body as the bad news does.

It's a very hard thing to do, but try to breathe deep for a few days and relax. Now that you know what is wrong for sure, you can take steps to start on this split in the road.

You're not alone! ( but then, you know that since you are here!:) )

Thank you everyone. I am doing ok tonight. It was stressful letting those around me know and dealing with their reactions.
Tonight I know there are people ready and willing to help. The hardest part of this is making sure my kids are taken care of. I can still care for them. I intend to always be able to take care of them. But I know there are others willing to step up and help if needed. So, I think I can do this now. I know what is wrong. I am looking reading what I can about Avonex. I have some questions and a concern I need to bring up with my PCP. But I have a few days before I really have to think about it. I am looking forward to hopefully feeling better. :)


LA

Welcome LA..:) So sorry for your recent DX, but glad you found a place, with PP who understand all you are experiencing.

I hope you find something to ease your TM pain. :hug:

Welcome to our family. I found that when I had questions, I had better results in asking them and remembering answers if I wrote them down. It also kept the docotr on tract. He would say 'what else have you got there?". It also helps if you take soemone with you.

Welcome LA! I'm sorry for the reason you found us. :( I'm glad that you did though:). We're a loud, rambunctious bunch sometimes :D:Dbut we will be here for you anytime you need help with anything!

I was on Avonex for a while and so are other people here. Maybe we can answer some questions for you, as well as your doctor if you would like.:hug::hug:

LA,

Welcome to NT!

I am sorry about the bittersweet diagnosis. It is bittersweet - glad to have answers so that you can get the proper treatment but dread the words "You have MS."

For many of us the 1st year was the toughest. Please know that we are all here to help you through all of this and support you.

Welcome to NT!

Sorry about the Diagnosis, but glad you found some answers.

Be kind to yourself the next few months. Your emotions may run all over the place, which is normal. :hug:

I don't know if I should say I'm happy for you or sad. :hug: It's wonderful that your not in limbo and you can finally start treatment.

I also want to say, Wow you have 7 children also? :) I have 6 boys and 1 girl ages 3 to 10 (no twins or triplets :rolleyes: ).

Oh wow! Mine are more spread out. Our oldest is 24. She and her husband just had our first grandchild a month ago! :) We have a 22 year old who is in her last year of college. Then we have our 5 children who we adopted, all as infants. A healthy 11 year old boy. 11 year old girl, 9 year old boy, 5 year old girl, 2 year old boy. The last 4 all have Down Syndrome. We have lots of medical and therapy issues to deal with. I was on top of everything with no trouble and we were even seriously considered adopting again until all of this hit. :( Now I am just lucky I have enough help, I can not do it all myself any more. My husband helped, but being the mom most of the work is on me. But the kids are great and what keep me going! :)
You sound very busy too!

LA

Hi and Welcome to NT. Sorry about your dx but at least now you know.

Now you have to take care of you! This board is wonderful for support and knowledge. Lots of information!

Good luck and Take care:hug:

I am trying to get answers on the Avonex. I am all set up to start next week. My main fear is it may cause my heart rate to go crazy. I have problems with Tachycardia and am on a beta blocker. I have learned on another list that it could be a problem. I need to call my PCP on Monday. He is out of the office today. I am hoping it will be ok though.

LA

I'm sorry you are diagnosed with MS. On the other hand I'm glad for you as now you have a confirmed answer. You're in the right place for support.

BTW, there has never been any clinical linkage of MS to having 7 children. Although I don't want to take any chances so I stopped with 2. :D

LOL, Dr.'s have a hard time believing that anything could be wrong with me because the "stress" of having 7 children MUST be causing all my SX, Hmmm, what if I don't even tell the next Dr I have kids at all. :D

Sorry you got the dx of MS. I guess ending the limbo is always good, if only the news was equally good :wink:

I'm newly dx (Nov. 07) and was lucky not to go through years of tests and limbos, but just a few months, and found that pretty hard. I can't even fathom 5 years in limbo!

While personally I think anyone with 7 kids must be crazy--if you're not at the beginning, you will be at the end. (lol - I come from a family of 8 kids!) I'm sure you get lots of satisfaction from your family and taking care of your children, I'll bet you're a wonderful mom.

Chin up and all that.

Hello,
OK, I love your sense of humor!!! :D I am sure there are other things I could honestly blame on my 7 children but I think you are correct, MS is probably not one of them!!

Now the grey hair,,,,that is a different story! :D

LA

I prayed really hard this week that the subject of my children did not come up. What actually happened was these two MS doctors, a man and a woman, both rolled their eyes when I told them what the other neurologist had said. I was much more comfortable after that!

It is just a bias and the problem is you do not know what doctor will have an the bias and which one won't.


LA

Catch
 

Oh yes, I was probably crazy from the start! :D I just have good sense of humor and I truly do enjoy life. I will be 45 soon but I still enjoy fun impulsive things. What's more fun than 7 children, a son-in-law and a brand new grand daughter?!:)

I can't imagine hitting a bump in the road like MS without them.

LA

That's the attitude! Good for you. Besides, who cares how many kids you have. When we were growing up (I'm 43) large families were not that uncommon. I am one of 10 kids. My mom was not crazy, she was crazy in love with my dad. She still is. Stress? Sure they knew stress but everyone always chipped in and my mom kept things organized. (colored bins for laundry, chores with a chore chart, all meals were planned out on a menu and she shopped accordingly, etc.).

I do wish you the best of luck. You will do fine as you know you have your kids and that beautiful grandbaby.

hello and welcome,

i'm sorry for your dx (diagnosis) but i'm glad you have a firm answer to the problem and can start on a DMD.

i'm on copaxone and don't know anything about avonex but good luck with it.

i'm single so can't imagine having that many children.
i love the peace and quiet of my apt. :D

hope to hear more from you.
ask us anything.
i've been dx'd 5 yrs. rrms, then spms.

You are sounding much better! You will have ups and downs...believe me!! :D But if you keep humor in your heart....you will do just fine!

And as far as those kids go! I would imagine that was all planned out so that the oldest one at home can take up the slack, when mom needs to rest!

Welcome LA.......I was on Avonex for a few years. Maybe I can be of some support for ya.

Yes, thank you! I am such a chicken when it comes to taking new meds anyway. I finally took the medication the doctor gave me for Trigeminal Neuralgia. I had to check it out with the pharmacy to make sure it would be ok.
I have some allergies and am on medication for a rapid heart rate. I always get nervous about medication. Anyway, I got relief! I didn't even take the entire dose. I was told if it really was TN I would get relief quickly, and I did.
I think the nurse will be here on Wednesday. Would you suggest that I have someone around after I get the shot? I am wondering how fast it will affect me. The doctor ordered half a dose to start with.

LA

Welcome to the forum, LA. Sorry about the dx, but glad you have some long-awaited answers so you can begin treatment.

I admire you for your courage, and for your commitment to your special needs children. You are an angel. :Heart:

Cherie

ME too! :hug: Welcome to NeuroTalk ! Sorry you are here because of MS, but you have found a great place to hang out. I had other symptoms, but like you it took a while and a few attacks before the path to an MS diagnosis was clear. I have only used Copaxone and it seems to be working for me.

Right now I worry more with the tachycardia and meds for that than anything else....except for menopause creeping up :o.

Again, welcome to the forums.

The tachycardia thing really stinks because it makes me feel so limited. I was told that increased heart rate was not a side effect of Avonex however there are some heart issues that are made worse. I don't have any other heart issues that I am aware of. I was put through a complete work up about 20 years ago. Have been on a beta blocker ever since.

I understand the menopause thing. I have a hysterectomy this fall. They were able to leave one ovary but I am not sure how well it is working. :(

I agree, this is a great board! :grouphug:



LA