[lindkaye]

:Well, went to my neurologist apt today and she confirmed it - MS. I kinda expected it but its different when they actually say it! I had an MRI in 2004 that showed lesions, but that was all ,so we were just watching. Well, had followup MRI last month and now it shows new lesions. On top of it, this weekend I had a severe eye pain, felt like someone stabbing me in the eye. Then my face went numb and stayed that way for about 2 days. I was a little upset because dr stated I had MS and wanted me to start on Rebif, but had no information sheets or anything on MS - just kinda in and out of the office quickly. I have been reading on the message forum here (I also have RSD in my right leg after TKR gone bad). Hopefully you guys will be patient and answer a few questions I have as my head is spinning right now. 1) What kind of side effects have you experienced with Rebif? 2) I HATE shots,...how bad is it? 3) Dr stated my case was mild - so what category would I fall into? 4) I told her my foot has been going numb on me and I have pin and needle feelings. Also, I am so wobbly, I have fallen quite a few times. She stated this was not a symptom of MS....?? I thought this was ?? Also, I have been having jerking movements all over my body in the evening mostly. She stated is was RLeg, MS does not do that...?? I thought I had read other people having these symtoms with MS.? 5) I have severe pain with my RSD in my leg, but do you think some of it could be MS? I have such pain in the am - trying to get out of bed and sooooo tired! Sorry to ramble - just not sure what to think at this point. Thank you for reading and listening. Its been a really bad last two years -hubby had prostate cancer, I lost my job, Knee replacement went bad and then I got RSD. Only thing went right was I was accepted for SS Disability right away. Anyway - thanks again for giving any advice you can - its much appreciated.

[NurseNancy]

dear lindkaye,

i know what you mean about knowing you're being worked up for MS but actually hearing it is still a shock.

i can't speak to rebif as i take copaxone. when i first saw my dr i was given info kits on EACH of the meds. my dr and i discussed a choice and the reasons for it but he left a lot of the decision up to me and what would fit into my lifestyle.

i believe that you just "get used to" the shot. it becomes a part of the routine and you learn how to deal with any side effects. it takes a bit of time but it does get better.

your dr doesn't sound very informed, or particularly important, responsive to you and the problems you have. i would strongly suggest that you get copies of your records (even if you have to pay) and get copies of your mri's (go to the place that did them. you have a legal right to them) and seek a second opinion.

you may need several specialists on your team (of which you are in control) to help stabilize your conditions and give you the best care. perhaps you can find an MS specialist dr. call 1-800-FIGHT MS for your local MS society. they can give you referral names & #'s.

stick with us. we'll answer any Q's you have. and, i'm so glad you've got your disability. that really helps.

[SallyC]

So sorry Lin for your confirmed DX of MS.

I never had Rebif but I did have Avonex which is the same med....with Rebif you take a higher dose and have a shot 3 times per week instead of the once a week with Avonex.

I had the flu side effects....they never went away or got better, so I stopped A and went to copaxone.
I was on A for 7mos and Copax for 10mos.

I am now only on LDN ( low dose naltrexone).

BTW, I was DXed in 1976 and was med free and in remission for almost 20 years before having a second bad attack. Sooooo I would suggest not taking anything for awhile and see how you do. None of the DMDs are a cure and they don't work for all.

I'm glad you are here with us.. Good luck with your choice of Med.

[FinLady]

Sorry I can't help on the Rebif front. I'm another Copax person. The shots are daily for that one, and I was really nervous about it. I'm a needle phobe. But now I can give myself a shot, but I still run when someone else comes after me with one.

I agree with Nancy. It doesn't sound like your neuro is very informative. The NMSS can help you track down someone familar with MS.

The stabbing pain in the eye may be ON. I'd hunt down an opthomoligist (not sure of spelling, know it's an eye doc with an MD) to help confirm that.

Hang in there!

[legzzalot]

So Sorry for the final verdict. i remember that feeling. I think I cried for 2 days straight.

I can't speak for Rebif as my insurance company flat out refused to pay for it, so I too am on Copaxone. I do agree with Nancy that you do get used to it. Mine is part of my morning coffee ritual now.

Most of the symptoms you are having all sound like they could be MS I would be worried if my Neuro dismissed them so easily too.

I would also point out that people seem to have less reaction to Copaxone than to Rebif.

I will also tell you have gotten more answers about this disease on this forum than I have anywhere else. I also get much needed pick me ups when I am having a crappy day. I would definitely seek a second opinion. ( I went thru 3 and now about to find a new Neuro myself) until you find one you are comfortable with.

[lindkaye]

Thanks to everyone for your advice. I realize I am finding out alot more about MS here than in talking with my neuro! In researching, I have found out that my Pain Management doc for my RSD is part of the MS department at the hospital in Seattle. So...it just happens I have an appt with him tomorrow, so will pick his brain and see what he says. I've known since 2004 about the lesions, but really didnt think I guess in the back of my head it would amount to anything - guess I was wrong! Now I am trying to think back and see if anything that happened a little "wierd" where I was ill could have been a flare. Thanks again and it is really nice to have this forum with nice people like you guys to talk about all this insanity!

[Lady]

Hi lindkaye,
Sorry you had to join the the MS club. It takes time to go through the stages of grieving to reach acceptance. It may take time for you, or not.

I was in denial forever I think. I still want them to take away my MS dx, after about 30 years with it. But they insist.

Others can accept the dx and go right on living normally after a good cry. You can always punch some pillows, works for me.

As for your question, I was on Avonex for a year and then Copaxone for 3 1/2years. Avonex my body did not tolerate. Copaxone gave me some issues and then it stopped working for me.

I am now on LDN as Sally and some others are. It was our choice. Sally and I were dx'd when there was no medications or treatments but steroids. They said back then, just live your life and maybe your case will be mild.

You should get a MS Specialist or Neuro who understand MS better than your doctor does. He doesn't sound well informed. The treatments should be explained to you, and you and whoever you confide in, can discuss the medications.

Never rush until you understand how these medication will effect you lifestyle. Some make you ill for days. Others may not. Everyone is unique. You have to decide what is best for you. I wish you good luck with your decision making.

Just relax, take a deep breath, and read up on MS disease treatments and MS symptom medication. Do not suffer. The Neuro can give you something to help you. The people here are wonderful when you have questions. They help me too.

[PolarExpress]

Everybody's pretty much chimed in with good advise..Just wanted to add my and good luck talking to your RSD doc ~ hopefully he'll be more helpful..

[tovaxin_lab_rat]

Hi Lindakaye, welcome to NT.

I was dx'd with MS in 2001 and dx'd with CRPS this week.

There's an RSD forum here that you might want to check out (I am just learning about it). But the Pain Management is going to be about the same - Neurontin, Zanaflex, Lyrica, Baclofen, etc. I'm on the lowest dose of Neurontin right now and just starting nerve block shots.

As for the MS - could be a contributing factor, but maybe not. Nerve pain I am finding out is the common thread between the two diseases.

The CRPS is affecting my right shoulder and I now have early symptoms of frozen shoulder due to inability to move my shoulder because of the pain. Now that we have the pain under control, I hope to gain movement back in my shoulder and arm and muscle tone back.

Good luck on your choice of meds to treat your MS. I am on nothing at the moment. I just finished a clinical trial for Tovaxin. (rather the trial was terminated due to lack of funding).

Lots of good information here. Lots of good people too! I hope you enjoy this place!

(I am headed to Seattle next week for the NW Flower and Garden Show!! I love Seattle).

[Blondi]

Hi Lindakaye... sorry to hear about your dx. I can still clearly remember the day I got mine. My neuro was going out of town and didn't want me to wait so he called me at home and told me. I saw him a week later and he gave me kits for all of the drugs. I asked his opinion and he said it was entirely up to me. He wanted me to educate myself about all of them and choose the one that I would be most comfortable with. I chose Rebif.

I have been on Rebif for almost 3 years and I will be completely honest with you... I have not gotten used to the shots, I still hate them and and dread my shot days. I hope that doesn't scare you, but I want to be honest.

However, my first follow up MRI after starting Rebif showed that my lesions were less prominent. I went 2 1/2 years without a relapse.

The side effects (flu like symptoms) only lasted about the first 6 months. I would pre-medicated with Aleve or Tylenol and that would take the edge off. I no longer have to do that. My biggest complaint is that the medication burns.

Everyone had really good suggestions. I hope you will feel some comfort in knowing that you are not alone. This is a great place for support and information.