got my diagnosis

[Military_Wifey]

brief history...I had symptoms for 5 years but doctors never did any testing, they just said it might be this or that and blew me off. After seeing a new pain management doctor in March, they thought I should have some MRI's (1.5 tesla) just to be safe. I had multiple brain lesions in multiple MS locations on the brain MRI. The c-spine had no lesions, just bulging discs. The MRI said most likely MS, so the pain doctor called me and said I have MS and they were sending me to Neuro for treatment.

Thanks to the members here I looked for a Neuro who specialized in MS and made a timeline of my symptoms. The MS doc was wonderful. He ordered blood work to rule out mimics, an LP and a re-do of my c-spine MRI on a 3T machine. I saw him back just 2 1/2 weeks later which was yesterday. He said based on all the testing and the history he is confident in saying I have MS. He says I have had for a few years and is relapsing-remitting form. He wants to start meds immediately.

Originally, he wanted me to go with betaseron but due to allergy risk he decided on copaxone. A nurse will come to my house and teach me how to give the shots. I am happy to know what is happening to me but it's still scarey to think this is the rest of my life. I am grateful to all the members who helped me during my "oh my God, MS..my life is over" panic phase I went into when the pain doc said I had it before they ruled out mimics! And thanks to all the members who helped me to look for a MS specialist, and those who helped me prepare for my first appointment. This is a wonderful site with amazing people!

-Dee

[Military_Wifey]

Thanks! I appreciate all the advice. I was terrified of the needle but quickly learned it was the med itself to fear! LOL. I have a little extra around the middle but am fairly small everywhere else. I am 5' 2'' and 125lbs.  I notice it is less painful at different areas but the directions say only use one area per week. I am tolerating the burn now its mostly that cramping/charli horse driving me crazy! Hoping it fades soon.  :-)  Thanks again for the help!

-Dee

[Lulu54]

Dee,
Try the needle all the way at a 10 - the deeper you can go the less the sting according to my neuro.  BUT that also requires some body fat - if you don't have enough I will loan you a few pounds!  

Yes, now you just keep doing that daily injection and you'll know if it is working for you in about 4-6 months.  Your next MRI's will give the neuro a clue as to how the disease is progressing or slowing.

Also, you may actually find in a few months that one day you get up and recognize that you feel pretty good.  Its a strange realization when it hits.  

good luck,
Lulu

[Military_Wifey]

Thanks! I am glad to have a diagnosis and treatment! How do you know if the med isn't working? Do they just have you wait and see how many attacks you get or something?

-Dee

[Erin0313]

Dee,

Hi! Congratulations sounds weird but it fits. I know that finally having a diagnosis and a plan for treatment is huge so congrats.

I started on Copaxone but it didn't work for me. The good news is there are other choices to move on to.

I hope that your treatment goes well and you find peace now that you no longer have to be on the path of searching for a dx. Good luck & well wishes

Erin :)

[roncart]

Thanks for the information. I figured that I had to get the myelogram for my neck anyway so as long as they had to go into the spine they might as well take some of the fluid out and test it. I know that it may not give me answers but as I said I have to get the other test anyway. I pray that it isn't as painful as the one (myelogram) that I had 20 years ago was. I suffered during that one with the needle and then after with the headache! I wish they could knock you out and do it but as everyone knows they won't. At least they had some compassion and have given me 5mg. of valium to take 90 mins. prior to the test and then another 5mgs. to take during the procedure. I just hope they get it right the first time because I have read some real horror stories on this site. Thank you soooo much for your support and concern.

[Military_Wifey]

Hello, and welcome to the forum! It would be easier for all to see your post and then you will get more responses. If you haven't done that already, go to the forum's main page and repost. This is a great group with wonderfully knowledgeable and caring people!

-Dee

[Military_Wifey]

Thanks for the support! I know how limbo feels! I was just lucky enough to not have to stay there long. I am wishing you both speedy diagnosis of the correct issue by wonderful docs, and successful treatments! Don't give up!

-Dee

[Military_Wifey]

Thanks for the Copaxone help! Needles suck but I know it could be much worse! I have my setting at 6, it should be deeper to prevent sting? Like 8 or all the way to 10?

-Dee

[MsWobbles]

I know how it feels to have symptoms and no diagnosis - horrible!!.

Wish I could talk you out of the spinal tap - mine was horrendous and yielded no positive information whatsoever.

If your current neurologist turns out to be unacceptable to you, I urge you to go to the website called MSNeuroRatings.com which will allow you to read reviews of neurologists who really are good (or even sometimes bad) at diagnosing and treating MS patients (whether diagnosed or undiagnosed).  That way, you will see other MSers' opinions regarding the neurologist before you waste any more time or money on new unknown neuros.  Just locate your state and town and you will see names and ratings which, judging from the names and reviews in my area, have proven to be very accurate indeed!

The website is:  http://www.msneuroratings.com/ratings.php

We can thank Quixotic1 for this excellent MS neuro website!!

Thank you Quixotic1!!!!

WAF

[MsWobbles]

Congratulations on getting a diagnosis!!  Now that you know what you are dealing with, you can make decisions and receive appropriate treatment!!  Getting a diagnosis does not cause or change what you have had all along - rather, it is an enabler!!  As one who currently does not know for sure, I would rather know!!

WAF (a military brat)

[charinka]

I have not been DX or have I gone to the doc.  I just have these weird symptoms and would like to chat with someone about them.

[Lulu54]

All who are working through the hornet nest,
Set your needle as deep as possible if you are using the autoinject pen.  That will help with the stiniging.  I also believe that initially everyone has this discomfort because we are training our bodies to work with this foreign substance.

Also, be sure to wait until the alcohol dries before you do your injection - if yo udon't it will defnitely burn like crazy.

be well and stick with it!
Lulu
dx 09/08, Copaxone user

[Tammy826]

I guess to say congratulations seems a little wierd but I'm happy you have a dx. I'm still waiting here in limboland but you give me hope. Nobody wants to have this awful disease but at least now you can get treatment & hopefully some relief. I'll keep you in my prayers! God bless you!!

[rendean]

Yes, I had similar reactions to yours. The first two were minor in nature. Like the bee sting feeling they warn you about. Then with the 3rd, all of a sudden it wasn't a bee sting but a swarming wasp nest of stinging , burning and downright painful. However, I iced as instructed and the pain did subside.

Into the 3rd week and the reactions are becoming less and less  noticeable , depending where I inject. The "plumper" sections of my hips and my stomach don't hardly sting any more at all. So, things do improve. You just have to take one day at a time.

Hang in there! Feel free to ask if you have more questions.

Ren

[Military_Wifey]

LOL! Yes, as women we have to be particularly careful of showing emotions! Wish you well too! How you like the Copaxone? Had first shot last night and I had severe burning feeling at site for like 5 minutes (like someone sliced me open and dumped a whole bottle of alcohol on the opening), then huge charlie horse type cramping for another ten min.

After that I was fine, just red, with white L-shaped puffy thing in middle, and sore until morning. Today you would never know I had a shot. Hurts if you touch it, so I know....don't touch it. lol. You have any problems with it?

-Dee

[rendean]

Quix's suggestion to run around screaming is a good one. Too bad she didn't mention it sooner...since I'm a month out from diagnosis, I would have nothing to blame that particular reaction on and then be labeled a "hysterical female with anxiety issues" (lol).

Wishing you well,
Ren  

[Military_Wifey]

Thanks so much! It definitely is one day at a time when you know it's the rest of your life. Frustrating, but like Quix said, you just handle it like all other challenges. I particularly liked what she said about running around screaming, might as well do it now in case I can't later! (laugh out loud). Anyway, this is a great site and I am so happy to have you in my network! Prayers for you too my dear!

-Dee

[Military_Wifey]

Don't give up! It felt like forever to me and I know it was amazingly short compared to others. I can empathize with feeling of not knowing. I kind of felt like an evil pacman was silently eating away in my brain.

I have a long list of medical history and most times the docs blew me off or misdiagnosed me without any testing. My biggest fear was it was MS but that the docs wouldn't find that out until it was too late for meds to help. When he said it was MS, I was so relieved to know I could now get help that I didn't really think about the fact that I actually have MS. (laugh out loud).

I think I am still kind of putting off thinking about it. I am a big cry baby and I haven't even cried yet. This makes my hubby happy because he says we can't get a 3rd dog or afford a new truck for me right now, and that's all he knows to do to fix tears! The good part is my meds get here tomorrow. I am terrified of needles, but I am ready to start this "loss prevention" journey!

I wish all of you great docs with speedy answers!

-Dee

[Military_Wifey]

Thanks guys for being so supportive! Don't worry, I am not going anywhere...you're stuck with me now!! Hahaha!

-Dee

[Guitar_grrrl]

I'm so glad you have answers, now.  I'm still trying to integrate my own diagnosis and the whole idea of living with unpredictability.  One Day at a Time.  

Wishing you lots of luck, and heartfelt good thoughts,
Guitar_grrrl

[Ufrustrated2]

congrats! if that is even warranted for such a journey.

nevertheless, you are now on a therapy course and that beats the neuro merry-go-round blackhole any day.

Damn the torpedoes & Godspeed

[Fluffysmom]

I'm as grateful as you are to have found this forum.  I'm glad these people helped make your journey easier.

I'm one of those still in limboland, even with an MS specialist (notice I didn't say good or even competent).  I keep plugging away, and hope to someday find an answer.

I appreciate your sharing your journey with us, and will be here with the rest, supportive and caring, even if I'm not participating.  As a limbolander, I don't know how it feels, what it's like to use Copaxone, etc, so I might not have much to contribute.

Just know that I'm another caring forum member that feels for you.

Someday I may be going through the acceptance process, and will learn from you what to expect.  Thank you.

Take care,

Kathy

[fdmh]

And my sx have only been going on 9 mos that I know of ( I would say 2 different occasions).   I have a feeling my next check up in September won't be much more helpful as far as answers

[fdmh]

I hope my new neurologist who I think is an MS specialist will be as proactive and helpful as yours.  My sx are only sensory it seems.  I have no diagnosis and would be considered as in limboland.   Also, does anyone know how to find out if your doctor really is an MS Specialist?  It says so on the Dean provider page, but how do I know for sure.  Best wishes to you and I hope your treatment starts out and goes ok.