Help!!!just Diagnosed-frantic
 

Hello everyone out there! I am 48 years old and it was just confirmed to me from my neurologist that I have mild MS. I had an MRI whch showed lesions as well as a spinal tap indicating MS. I have had dizziness on and off for over 9 years,which was when I had my first MRI, that also showed a few scattered lesions that was discounted as my having had elevated BP's during my last pregnancy.Only other symptom during that time span was an occasional feeling of numbness in my rt.arm ,so infrequent that I could count the times on one hand-no pun intended!! I know nothing about this disease yet,am very upset and have been surfing the web and have read alot of different things so far.I guess what I really want to know is,should I start medication,is there any dietary considerations or vitamins I should look into,and what does mild really mean? I go from feeling extremely distraught to then feeeling like maybe this is a blessing that I know this now before it gets worse.Any help or advice would be greatly appreciated. Help!!! Nancy:

Hi NancyNurse. I'm sorry about your diagnosis and I don't have any answers for you. I am fairly new to this and had quite a few tests run last year, but so far everything has come back normal for me. I just wanted to say hello. I'm sure some of the more experienced folks here will have some answers for you.

Hi Nancy and Welcome to the Forum.:)

Hmmmmm Mild MS. Some people with MS start out with a mild form of MS but, most of the time that is temporary. It's mild until it isn't.

I had a mild form for almost 20 years and then the exacerbation from hell came at age 51. I tried the MS Meds but I went right to SPMS in due time. I am on LDN now, and it seems to be keeping me stable.

I suggest you talk the MS Med. choices over with your Neuro and see what, if any, He/She suggests. None of them is a cure but can keep the exacerbation rate down and perhaps slow your progression of disability.

I hope your MS stays mild for years and years. If it stays mild, you could opt to wait on an MS Med. Maybe they'll come up with a cure soon.:) They didn't have any Meds for MS when I started out, and since I stayed Mild for so long, I guess I didn't need them.

Good Luck and come back to tell us how you are doing.

:hug:

Hi Nancy,, 1st of all,, take a deep breathe and try to calm down,, MS is not a death sentence..

as Sally says, mild MS can stay "mild" for years,, mine did. 26 yrs later, I have relapses..

my way of thinking, your neuro probally, { just a thought} won't script you any MS drugs, unless, you have a real bad relapse,, then you have options,, listen to your neuro,,,

you work then ?? good,, {if so}.. I did until, I couldn't teach my classes,, students were more helping me, then me helping them,, knew it was time to throw in the towel,,

vitamins,, yes,, a multi works,, diet,, just watch your carb intake,,get plenty of rest, try to stay clear of stressful situations,, stress is bad for MSer's..

keep us posted,, hope this helps a little

There many, many people who would trade with you. As with any disease, if you look at the gloomy side, you'll be gloomy, but if you find the bright side, that's what you'll be. You get to make the choice, either way.

Thank you all for responding.I really appreciate you advice and time. Does anyone know if the Interferon meds really help curtail the progression? As much as I am anxious to start them,I am also afraid of them! Sending out well wishes to you all!!

No.

There is no guarantee the Disease Modifying Drugs (DMDs) will slow progression but that is what they are supposed to do. For some the DMDs seem to work, others keep progressing regardless.

This disease is a crapshoot.

Mild MS is only mild until it isn't.....Having said that I am still considered mild even as I am into my 21st year of diagnosis. But even if you are considered mild this disease can be very difficult and can leave residual symptoms.

Thanks Snoopy!! I think I'm leaning towards trying them,not sure which would be the one though.I still need to review them with my neuro. Thanks again. Nancy

Welcome Nancy nurse, this is Joycie nurse! I was dx probable MS when I was 47, was able to work for about 3 years and am now on SSD. I am glad for all the years I worked as a nurse in that it gave me a nice monthly SSD check and now my body can concentrate on being as healthy as possible. I am absolutley positive that I would not be as healthy, not that I am healthy, as I am right now if had tried to continue working.

I am on Avonex. I started it about 3 months after dx. 10 yrears later I still only have the one lesion. Is that because of the Avonex? Who knows! But I'n not willing to chance it. I like Avonex because it is once weekly shots and it's IM. I get routine blood work to make sure my liver is OK with all of this. Stay in good communication with your Neuro and PCP.

Good luck and I'm glad you found us!

Dear Doydie,thanks for your very encouraging words!! I can't tell you how much I needed to read what u wrote.I am afraid of the side effects of taking Avonex,was wondering if Copoxone would be better even though its a daily sc versus one IM shot. I am so pleased to hear how well u are doing! I too have been wondering how long I will be able to work.I currently work in a very busy OB unit- no stress there !!! L O L Hope to hear from you again! Nancy

Hi Nancy,

Well, you've obviously gotten some good responses. I just wanted to say I am sorry about your diagnosis. I have had MS for probably about 30 years, but was only diagnosed not quite 7 years ago.

I was encouraged by my Doctor to start one of the meds right away and did just that. I was on Avonex for 1 year, and did alright, but I have now been on Rebif for about 5 years. It is strange but the Rebif given 3 times a week and being stronger does not give me the side effects that Avonex did. I think it is because it stays more evenly in the body. Having said that, I want to stress that Avonex did not give me that bad of a reaction. I usually felt kind of tired and bad the next day, especially in the morning, then it would be over.

Do not be afraid to start one of the medications if you and your Doctor feel you should. Many Neurologist are now recommending that even some people who are "probable MS" be on these drugs. Before I started Avonex I was scared to death because I kept hearing that I would be sick, etc. For me it has not been that bad.

OK Nancy. Time for the down and dirty about my Avonex! When I first started taking it, I had some mild flu like reactions, felt achy. I take two Aleve the evening I take my shot. I continue to have some really wierd dreams. Both my neuro and MS specialist I saw in consult say that this can be from the Avonex. They say it's all part of the 'flu like reactions'. I don't know, I never had really bad dreams when I had the flu. These aren't bad dreams, just totally wierd, close to sience fiction.

Sometimes I have some swelling and inflammatrion around the injection site. It might come up three or four days after the injection and last a week or it might never occur at all. I have only had one bad injection reaction. Last December I somehiow hit a 'nerve root of a nerve root of a nerve root and how many more 'of a nerve roots' can I go back. Anyway my neruo said it was some obscure nerve root. Bottom line is that I had severe pain in that leg for about 6 weeks which caused me to walk wierd and put most of my wieght on my other leg which gave it problems. After two courses of Cortisone dose packs, and some Lortab later, it is all past hx now. But it did make everyone else pick up my duties at Christmas!!!!

So that was the down and dirty about my Avonosx hx. But my one lesion is still the same. Worth it? Yes!!!!!!!

Dear Doydie and Virginia,
Thank you both for taking the time to reply.This site has been a wonderful place to come to due to all of you out there.Thank you all!!! My neuro did classify me for now as "probable MS " ,which I feel means definite MS really,esp. with the MRI and tap both indicative of MS,however mild at this point . I am definitely going to take one of the meds,will wait to see what my neuro thinks,also just made an appt. with an MS specialist on Long Island who supposedly is world renowned for her MS work,esp. with pediatric cases. {I live out on Long Island }I am going to ask her about the drug Tysabri also.For now I started a vitamin regime along with some fatty acid oils,and am trying to not get too stressed,like when I accidently got some soap in my rt.eye [which I didn't realize at first,]I started thinking I was having that optic neuritis I read about!! Afterwards I realized I really need to take a deep breathe about all of this!!!!Thank you all again,I wish you all well,pls.keep in touch with me,I love the support and kind words. :hug: Nancy

Nancy, I hope this wasn't your goodby from the forum. You are more than welcome to stick around. Other people who are in the early stages of dx need people like you to give them encouragement to stick to it, keep active with their doctor, etc. You seem like you have done research since you mentioned destressing your life and taking vitamins.

I am only assuming from your username that you are a nurse. I was one for almost 30 years before I had to quit. They were 28 of the most wonderful years of my life. Take care and hope to see you back here!

Hey Doydie,I am definitely sticking around !! I am an OB nurse and have been nursing for 26 years.Like you I loved the job,am now fearing that eventually this will be coming to a close for me.Even though I love OB,it's a very stressful unit. My health definitely isn't worth that.Did you have a hard time working with the MS when you were working? I appreciate your posts,thanks.Nancy

I am on Copaxone now and have been for about 4 years with time off during two pregnancies. I tried Avonex for a year and the side effects were too rough for me. I think C is the drug for me and I do believe it is working for me. I hate the shots every day but the needle is much smaller. The IM shots were really hard for me.

Starting a therapy was a big step for me. It was the only way I could do something to take control. I would recommend starting a therapy to do something positive for yourself. Give yourself a break for awhile. Being dx'ed is extremely traumatic. Take care and welcome to the board.
Jean

Nancy, at first the only hard thing to do was to reassure all the staff that I was OK and to answer all their questions. Since I had been in the hospital as an emegency for a week, they all knew my dx. One of the things I liked the most about nursing was the education. So I never held back anything about MS. I thought it would just be a wonderful teaching experience.

When I found out I had it, I was on the nuero unit and I asked the nurses for a neuro book so I could study up on it. They had the most archaic book I had ever seen. Then when I got home I got out my old med/surg book. What a mistake!!!!! So I went down to Barnes and Nobles, sat myself down with several books, got on the internet and found out that it wasn't all about preventative bedsore and aspiration pneumonia care. See, I went to school in the ealy 70's and that's all MS care was. So I found out it wasn't a life sentence. I also used my experience in my teaching of my patients. When my newly dx cardiac patients thought that their life was over, I gave them a litle of my hx.

I did fine for 2 years. Then I started to realize little things like not being able to remember some of the very basic cardiac drugs and then the cardiac surgeons names. It's kind of hard for your patients to trust you when you can't even tell them the names of the cardiac surgeons after their cardiac cath. Luckily, one day after a couple of days off, one of my legs went out and I called in sick. I never went back. So I never had to make that heart wrenching desision to have to quit work. God took care of it for me.

I had good benifits from the hospital. Between family leave, unused sick days, vacation days and everything else, I was paid for another full year!!!!! Then I went on Short term disability and then SSD. My SSD check is stillll bigger than my husbands monthly income. But he is just a pharmacy tech. So nursing has taken care of me and when I turn 62 I will be able to draw my pension from the hospital.

Thanks JMAK,I appreciate your post.I am feeling that the copaxone might be the way to go for me also,I'm not crazy about the daily shot idea but it definitely beats the alternative of possibly getting worse!!! I know I do need to chill out alittle as well. Planning on going upstate for Easter to see my family which should help tremendously. Hey Doydie,thanks again!! Everyone at work knows my situation since my nursing manager blurted it out at the last staff meeting!!!Oh well!!Like they wouldn't have found out anyway.I just wanted to keep it alittle quiet for awhile.Hope everyone is feeling great,will keep posting! :) Nancy

Welcome NancyNurse, I am on Avonex. I started it when I had my first episode. that was three years ago and I did pretty well. I am having a relapse right now however, I have to wonder if it would have been much sooner if I wasn't taking this medication. Only time will tell, but I have to say Avonex has served me pretty well.

Good luck and try and stay positive.

Dear Penny Lane,thank you for responding.I'm sorry to hear that you are having a relapse.I hope that you are feeling better very soon.Glad to hear that the Avonex was okay for you. Nancy

Thanks NancyNurse for your well wishes concerning my relapse. I have to say that I am feeling better. This episode lasted about four weeks and I am now on the up swing thank goodness.
This episode was nothing compared to my first one that layed me up for a little over 3 months. I just hope it is a long time or never before I have to experience another one.
Now, I just have to start to strengthen my leg up again, since I used it so little the last several weeks.
Penny Lane

Penny Lane,

I have been there a few times....starting over to regain strength and endurance. It can be frustrating but possible.

Wishing you all the best.

Nancy,
I was diagnosed in 1994 after nearly 20 years of off and on symptoms. Because I was in my 40s and still working ansd walking unassisted, I was told it was benign and very mild and I would probably never get much worse. By 2001 I was no longer walking on my own for more than a few feet and had lost most of my vision.

My neuro started me on high dose IV steroids and when I saw an improvement, started me on Avonex with monthly pulse dosing of IV soulmedrol. I was on that regimen for nearly two years. Initially I saw some improvement but after a year, the decline started again. Mostly, I had awful side effects from the steroids and tolerated the Avonex well. In May of 2003 I started on Rebif and went off the steroids three months later. My husband was the first to really notice the improvement.

By six months into the higher dosing of this med, I was walking unassisted, had my vision back sufficiently to drive again after two years of not, and no longer needed to cath to empty my bladder. That improvement has maintained and, if anything, I continue to improve. I am probably more fit than at any time in the past 25-30 years.

I have changed my eating habits and eat far fewer carbs (almost no breads or pastas) , eat fewer fats and more protein. Lots of water helps bladder functioning. The only supplements I take are fish oil prescribed by my PCP for heart health and milk thistle to keep liver enzymes in normal range (the interferons tended to elevate them). I also exercise 20-30 minutes daily in the water and am walking a couple of miles 2-3 times a week.

I now I'm not cured but this may be as close as I will see in my lifetime and I'm content to stay the course till something better comes along.

Do talk with your doc about the options available. General thinking is that you are fighting odds of worsening if you're not on something to slow progression. Something. Anything. I don't recommend one over another. Just know what has worked for me.

Nancy, hi am snowbunny here. I take avonex, it's once a week, & the side effects that I have had have been mild. I take advil 45 minutes prior to injecting. I have occassionally felt a little achy, but that's about it. You still need to talk to your neuro, To decide what's best for you. I like the once aweek. No fuss no muss. Take care & good luck with what ever you decide.