Tuesday, February 09, 2010 robin asks

Q: My 27 yr. daughter had her 1st attack last April.Woke up with double vision-had mri & had 10 lesions

She was put on Rebif inj. for 3 mo's which made her very, very sick. Stopped them on her own and with in a couple wks. her depression lifted and severe pain in her joints stopped and energy begin to improve. She agreed to try Copaxone but had a reaction to them right away (hives ) and Dr. told her to stop.

My question is she has returned to her old self after 4-5 months of her 1st attack and has not had another. She works out has returned back to work full time and has been feeling like her old self. They diagnosed her with her 1st attack due to the 10 lesions in her brain, diplopia and a few other things. Her vision is now back normal. When she is very tired sometimes her eye will turn in some. She now says she doesn't believe she will have another attack that this was brought on by the trama of her best friend and cousin's sudden death at 26yrs. She was totally distraught.

She has an appt. with a new Neur. this month. I'm just so scared since she has not been on any medications for 7 months. I will tell you tho, I have noticed each of the two med's she tried her cogitive got worse almost immediately after her 2nd injection.

Why, would these injections make her feel worse? I'm afraid there won't be any out there to help her.

Her worried Mom

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Answers (3)

Lisa Emrich, Health Guide

2/12/10 1:28pm

Hi Robin,

Linda has given some excellent advice. A second opinion (new neurologist) is a good idea. I was diagnosed by one neurologist in a neuro clinic and then transfered to the MS specialist neurologist at the same neuro clinic. It was a good move.

Before the visit, prepare with a list of questions you may have. Be sure that your daughter is able to present her history as clearly as possible (write it down). Take copies of test reports if you have them and even the MRI scans. The MRI center I go to gives me a CD copy of the MRI scans before I even leave the building and then I later go back to get a copy of the radiologist's report.

From your description, it sounds like your daughter does indeed have the relapsing-remitting form of MS. It is possible that the stress from her friend's death contributed to the MS finally going into a full-fledged attack. Think back in time; have there been very minor occurrences of unexplained and odd symptoms which went away on their own? If so, those could have been MS attacks as well.

I haven't used Rebif (or any other interferon drug) because of the possible side-effect of increased depression. I already dealt with depresssion and didn't want to have to fight that monster too. So I used Copaxone for years without any problems.

I also live with rheumatoid arthritis and last fall started using Rituxan (an infusion medication) which we hope will help my MS as well. Beforehand my neurologist wanted me off of Copaxone for at least 2 weeks. I haven't gone back on Copaxone. Don't know if I will just yet.

There are other treatment options which the new neurologist might present. Betaseron is an interferon drug but is different than Rebif or Avonex. Tysabri is a monthly infusion which might be offered. A low-fat (low saturated fat) diet full of fresh foods (mostly plants) won't hurt.

The most important part of your question is that your daughter has recovered from her attack. That's wonderful!!! You can never know when the next one might come (if ever). That's the frustrating part of living with this disease. No predictable guarantees, other than over time (could be many, many years) the disease does progress in most people.

Please let us know what the new doctor says. It's good to learn from others' experiences.

linda roberts

2/ 9/10 9:20am

I am no expert but from my experience it does sound like your daughter has relapsing remitting MS(RRMS). Maybe her next appt with the Neuro will confirm this. Before you go to the next appt get yourself a list of questions and write them down, if you are anything like me you become dumb struck ! It is always good for your daughter to have a companion at these visits as 2 pairs of ears tend to get more information remembered.

As to your question of drugs :- go on line and do some research drugs are not always the answer Diet and exercise are all she may need. This is what plenty of people on this site do as well as myself. Check out Professor George J's posts on the benefits of diet and vitamin supplements you may find this helpfull

As i said I am no expert but i hope you find this useful

Linda

Lena

2/12/10 2:19pm

Concerned Mom,

I was a young woman as well at the age of 28 when I was diagnosed with MS but I was still just having episodes at that time (episodes are problems with MS that are happening to you that only last less than 24 hours and go away where as Relapse is certain problem you are having with MS that last more than 24 hours) in case that wasn't explained to you because at that time no one explained it to me and when I asked other MSers at the time they knew nothing either.

Anyway, when these Interferons became available, I went straight into Secondary Progressive, the doctor put me on Avonex and the first time I had taken it I never liked it either. Probably because I have never been or has anyone else for that matter been on a drug like this. I got off of it after a few months as well and my MS Doctor said you shouldn't do that because it has it's side effects on your system but it is really the only the type of drugs that will really slow the process of MS on it's journey in your life.

I have been on that drug now for 10 years and when a regular person who doesn't know you will never know you have MS. You must slow this process down to have a regular life as possible. If you are that age you must take it and it will give some advantages of normalicy then you take it.

However, at the moment in this world of MS you take advantage of what is available for you and that is approved and is known to do some go for you and live a calm normal life as possible and you will be amazed what advantages these drugs give you but you have to do a Pros & Cons List when taking it. For me, I get more Pro's than Con's with this sytem at the moment. It does do a number obn me time to time but so what.

The younger you are and are on this the slower the process is on you. You may find you still have to change your habits compared to what they were before but so what. If this drug or any of the three interferons works for you take it.

You would not believe how many older MS's wish they can look and do what I can, to a point of having MS, but they are already to far go in the disease for these drugs to really have any effect one them.

Remember, that these interferons will not take you back in time to what you were before but will definitely slow down to what is ahead. It won't cure the disease but it will let you manage normalicy for a longer period of time.

Just so you know that now, also going through a cancer, I can't work anymore so I have told my Dr. the goal I have set for myself, "To be the best housewife I can with having MS". He just goes to me with my history, "Good because that is about all I can do for my situation."

I am now 43 years old and actually very happy even though I am limited in what I can do and what I can't but in reality "SO WHAT!!!!!!"

Please stay on the drug and don't get sucked into ignorance of the medias and people's hopes and dreams of what they think will work for you right now but what really does. It is a major filtering at times.

Good Luck

Q: My 27 yr. daughter had her 1st attack last April.Woke up with double vision-had mri & had 10 lesions

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