Would anyone like to talk about their MS? Update 7/23/04

[Littlehero'smommy]

Would you like to talk about your MS? At what age did you find out the diagnosis, how long has it been, did you do any clinical trials, what meds are you taking, etc? Not meaning to be too personal, just trying to find out what others are going through. As I stated in a previous thread, we found out my DH, age 35, has MS about 3 weeks ago after about 2 months of being ill with dizzyness, balance issues, muscle aches, etc. We went to his neurologists 2 weeks ago and she put him in the hospital and he did the solu-medrol for 3 days, then 2 days at home and then the medrol pill pack. His MS symptoms have diminished except for the loss of strength, but he has lost a lot of his muscle tone, he was a big guy. I would say in the past 3 weeks he has lost 25 lbs, which scares me. This weekend his back has really been bothering him and he is not a complainer. We do not go back to the neuro until the end of the month when he will start his clinical. The two drugs being studied are are Copaxone and Rebif, is anyone using these? We really do not know of anyone that has been diagnosed in the last few years and I know there are no two cases a like. We are trying to stay positive, but hearing of some cases you can't help but lose of that feeling.
DH started his clinical trial this week. The drug chosen for him is Rebif. He has only had 2 shots so far and they are 1/2 doses for the first 2 weeks. He got the results back from his MRI that was done last week and the Dr said it looked much better, but we did find out that he has an inactive lesion on hsi upper spinal area. I know he is jsut looking forward to the fall and cooler weather. Please keep sharing your stories.

 

[Chuck-PA]

I am 45 years old. I was diagnosed about 1 1/2 years ago. I had alot of your husband's symptoms. I have been on Copaxone for a year now. I have relapsing-remitting MS. I have had minor flare-ups. Severe pain in my arms and just recently a flareup in my eyes, I had fuzziness and double vision.
I am on Provigil for fatigue.

Some great websites:
MSwatch.com
msuniveristy.com
msaa.com
msfacts.org

Also, sign up with MS Society
1-800-FIGHT MS
Also, attened seminars that are in your area, you will meet others and hear about ongoing research. I am reading Montel Williams book on MS, very enlightening.

If you have more specific questions, I am more than willing to answer them.
As a caregiver for someone with an illness, you need time for yourself too.

 

[janskin]

I was diagnosed three years ago with MS. The left side of my body went completely numb. Now I suffer from dizziness, speech can be slurred at times, tire easily, lose my balance easily, drag my left leg when I walk and have trouble getting the words out when I want to talk.

I was Avonex for almost 3 years. I will be starting Copaxone today! I am so looking forward to not having the flu like side effects that Avonex gave me!

PM me if you have any questions.

They have a forum at www.nmss.org

 

[My4KidzMomma]

janskin, Did your flu-like symptoms every get any better? I was diagnosed about three months ago with MS (I am 44 yrs old) and just started Avonex last month. I have had such bad chills, aches, and fever every time I have taken my shot. I like only having to take the shot once a week, but hate those side effects!
I can see why you would want to go to the other products if the side effects don't lessen!
I have relapsing-remitting MS also and my symptoms are pretty slight right now. I was diagnosed because I had double vision and the opthamologist referred me to the neurologist. The double vision is better now, but have some numbness in my arms and hands and also have a hard time with going up and down stairs now. I am also very tired a lot of the time.
We have two adopted children who are in wheelchairs and so I have to keep my strength up as long as I can!!
Thanks for any advice.
Angela

 

[janskin]

For me the flu like symptoms never really got better. I would luck out maybe one week out of the month and not have them.
I completely stopped taking the shots in January because my quality of life was horrible. I was exhausted and achy all the time. The few months I was off the shots, I felt like a new woman. I stopped taking my medicine for fatigue. It wasn't needed anymore. I am not telling you to get off your shots. My doctor just refused to change mine. To me it wasn't worth it.

I finally took my records to a MS specialist in Houston at Methodist hospital and he really listened to me and started me on Copaxone. I have been giving myself the injections with a auto injector and it is so much easier! I don't have to look at that huge needle, I was deathly afraid of needles before the diagnosis.

Let me know if you have anymore questions.

Jan

 

[Travelnut]

Littlehero"smommy
My DH also has MS. Found out 3 years ago. He had just turned 36. He lost the use of his right arm and we thought he had a stroke. He has complete use of it now but when he's tired, it's hard on the small motor skills. ( writing his name) I would say to wait a while before going to any seminars. We jumped right into it to learn as much as we could and my DH completely shut down when we walked into the first one. He saw all the crutches and wheelchairs and just about lost hope. If you do go try to prepare your DH.
My DH has been on the Avonex for 3 yrs and he also has had problems with flu-like symtoms with just about every shot. His doctor is now changing him to Copaxone because the Avonex is damaging his liver. He is also on Provigil for the fatigue and this has been a lifesaver. He is a mechanic in a manufacturing plant and welds on the side. Busy all the time. About once a week he'll sleep the entire night and the next day and then he's ready to go again.
Just be there for you husband. Our life has changed very little up to now, but I know the day might come where it will change completely. We travel more (while we can) and don't sweat the small stuff. Life is wonderful!!!

Email me with any questions or if you just want to talk.

Robin

Going to Disney in Sept.

 

[UponAStar]

Hi All,

Just wanted to share my experience with the Avonex aches. I've been on it for over six years and used to take Tylenol Extended Relief or something like that (they then changed the name to Tylenol Arthritis Formula, not sure what it's called now!)

I ran out one day and tried Aleve and it worked so much better for me. With the Tylenol I'd have the aches until about lunch time and with 2 Aleve about an hour before injection time I hardly ever get the aches any more. BTW - I do NOT work for Aleve. ;-)

There was one instance however when my DH was learning to give me the injections from the visiting nurse and they decided to use my arm since I usually used my thighs. OMG, that night it felt like there was an alien inside my body trying to come out and I couldn't stop shaking. It was the only time this ever happened and we never tried the arm again!

Good luck to everyone!

 

[amasonmom2four]

That is interesting. As I look back on my shots, I realized that the times I use my arm for the shot I am sicker than when I use my leg. I will also try the Aleve and see if it works better for me - I have been using Tylenol too.
Thanks for the tips!
Angela

 

[GeekChic]

I've had MS for 18 years. i had my first attack at 15, i remember it vividly. i was misdiagnosed time and again until finally i got the proper diagnosis 4 years ago. i also have fibromyalgia and asthma among other a'la carte diseases.

i am not currently on any of the abc drugs; tried copaxone and had a bad reaction to it (i couldn't digest food, had terrible stomach pains, and had bad injection site reactions ) but i have a lot of drug allergies/reactions so this is not a common thing among people who use it, apparently.

i have not taken an interferon (much to the shagrin of my doctors) because for me, with my history and complicated allergy/other illnesses, it's not worth risking what it may do to me. this is a decision that everyone has to make personally; i have a history of depression that also contraindicates interferon use and is a major factor in my decision not to use it: keeping a positive attitude is VITAL in fighting this disease.

and it IS a fight. you have to keep as much function as you can going but know also when it's time to give something up. i had to give up driving four years ago because i knew i wasn't safe on the roads. trouble with vision/judging distances/dizzyness. i am on disability now but i am so lucky to have a wonderful husband who encourages and supports me in everything.

you have to have something to keep you motivated. i found that for myself in volunteering to make things for children's charities. the crocheting keeps my hands busy (and is good physical therapy) and giving the blankets to sick kids and making them smile keeps me going.

yes, as a caregiver you MUST be sure that you have support, too. MSwatch is a GREAT site and there is a caregiver support forum. Your husband will need to be reassured of your love now more than ever, because i think when everyone gets diagnosed they are afraid that people will stop loving them (i went through this, i was dx'd a year into my second marriage). Just tell him that you love him, and that will go a long, long way.

a thread like this is a great way to get info and ask questions that you can't find answers to on most sites. the MS society is a good website too.

i wish you the best, and your husband the best help possible.

hugs,
geek

 

[BETTYDISNEY]

Hello little hero's mom:

I also have MS I was diagnosed when i was 25 and i am know 36. It has been a real adventure through the years for me and my husband. I take solumedrol 1 gram per month as treatment plan. I tried Betaseron, copaxone. did them for about 2 years actually made me worse, but then again I was living in Florida and the heat really hurt me,so we moved back to boston which is were i am from. The doc wants me to think about rebif, i dont know yet. Its hard to deal at the beginning because you feel this is a BAD dream, but years and loved one seem to help a great deal. I love disney/universal and we take a couple of trips per year when the weather is COLD-Florida style LOL. I use a scooter or on some occasions my husband pushes mein the chair. I prefer scooter. Ihope this helped a little.

Good luck to your family
betty

 

[figment27]

Hello to All,
I initially had an attack of optic neuritis in 1995. I had just turned 37 years old.
I was not given the official MS diagnosis unitl May 2001.
However, my doctors were very aggresive with treatment as optic neuritis is a very common first sign of MS.
I began with Avonex from which I only had the flu-like sympotms for a few months.
Unfortunately, I continued to have many exacerbations of optic neuritis for which I received IV Solumedrol 1000mg for 5 days during acute attack. The optic neuritis has been so severe that I am now legally blind.
I then took IVIg (antibodies) for about 2 years, and stopped the Avonex. (Although, now I realize I should have continued to take th Avonex along with the IVIg.)
Continued to experience the visual problems.
I am now taking Rebif, again for almost 2 years now. Rebif is the same interferon as Avonex but given subcutaneously, 3 times a wek in a larger dose than the Avonex, which is administered intramusulary.
I had minor flu-like symptoms when beginning the Rebif which stopped in a couple of months.
I have had 2-3 additional exacerbations of the optic neuritis since being on Rebif. My last being Nov. 2003.
My neuro finds this "unacceptable".
He believes in a multiple medication approach, the same approach that has been used for cancer patients for many, many years now.
He wants me to start either IV Solumedrol every 4 months or Methotrexate in addition to the Rebif
The new miracle drug, Antegren, has just received priority status from the FDA. Most believe it will be available by late 2004 or early 2005. Clinical trials show reduced lesion load on MRI of 80-90%. I am hoping to begin this ASAP when it is approved by FDA.
Keep the faith. MANY new treatments are on the horizon, and a cure cannot be far off.

God Bless,
Barbara

 

[Luckymommyx2]

I'm another that has MS. I've been on Avonex since the beginning--just a few years ago. I had worse flu like symtoms the first year but no matter what my aches, etc would only has for about 12 hours. I used to take Tylenol like others and like others found that Aleve works incredibly well.
I feel really lucky because I believe I caught it early and got started on the Avonex right away. I don't have any physical problems at all other than being a little more fatiqued. Sometimes I wonder about my memory but that could just be old age trying to get me!!
I totally agree about the positive attitude. I've never felt sorry for myself, I'm a true believer in that we are never given more than we can handle, and I have found yoga and meditation to be incredibly healing for me.
I hope everyone can find the right treatment for themselves. That is the trickiest part of MS...it never hits that same way so what is good for one person probably won't work for another. Stay strong!!