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[yogamama78]

My husband is 31 years old. we have a 2 year old son. they are both the world to me. on 11-11-11 my husband was diagnosed with RRMS with symptoms of tingling in his left hand and foot and lesions found on his MRI. His father has MS so an MRI was ordered almost immediately. his copaxone injections started soon after that.

last thursday i woke up to the sound of my husband dry heaving at 3am. he continued to be sick every half hour since that time and around 2pm when he was developing symptoms of vertigo and double vision. i brought him into the ER convinced it was from dehydration. we just thought he had contracted a stomach virus that has been going around. there was a headache that was tied in with the nausea and vomiting so with his MS diagnoses they did another MRI. there were two new lesions towards the back of his brain. it's January and he was diagnosed in November and there are already new lesions?!?!? the one good bit of news the lesions that gave him his original diagnosis decreased in size. (didn't know that could happen)

They admitted him into the hospital Friday night and started a three day steroid infusion. By the next day his double vision was slowly getting closer together but his balance was still horribly off. Sunday his vision seemed the same and his balance better. Monday he was released still with his double vision, off balance and oral steroid prescription. Today is Wednesday and his vision is still somewhat the same but once again his balance and walking is getting better and better everyday. This is such a hard hit.

We are still getting used to the diagnosis and now this happens. The neurologist said that it takes about 3 full months for the copaxone to take effect but could it possibly be working if the other lesions are smaller? Is this considered a relapse?!?!? Will he be going through these episodes this severely for the rest of his life? when he was diagnosed the doctor said that with treatment and exercise he could go 10 years from now without even a sign of MS and now this??? Two months after his diagnosis? That almost killed any positive energy that I had! And what if he finishes the oral steroids and he is still seeing double and leaning to the left. Will he be this way permanently or does this pass once the inflammation of the lesions goes away?

This is all so new to me...even though I have seen it take his fathers mobility over the 12 years we have been together. I know that my husband will not take this laying down. He is such a fighter but its so incredibly difficult to cope with right now. I'm angry that this had to happen to him because he is such a wonderful man. I'm scared at what this holds for our future. I'm depressed that he isn't 100% better after the steroid infusions. I'm exhausted because I am taking care of him, my two year old now (when we always split duties:daycare pickup, bath time, feeding, diaper changes) and Im working full time. I'm sorry if I'm blabbing. I just want be as strong as possible for him and educated with this disease, the best way I can get that is communicating with all of you. Thank you in advance for any help and support you can provide.

[MSSINCE09]

I am so sorry

Hello, I am very sorry to here of your spouses recent diagnosis. I am a 38 year old female diagnosed july of 2009. At that time I was told also that I could possibly not have a flare/relapse for another 10 years, however since date of diagnosis I have had 13. I know this is so hard for both of you, but unfortunately this is the most unpredictable disease. Every time I have had a flare I have lost abilities but gained them back at almost 100% over time. Most of my lesions are on the left side and most of my problems are on my right side of my body. I hope that his lesions continue to shrink and that once he is fully recovered from this relapse (which has sometimes taken me months) that he has his function back. Wish you the best.

[MrsBones]

there were two new lesions towards the back of his brain. its January and he was diagnosed in November and there are already new lesions?!?!? the one good bit of news the lesions that gave him his original diagnosis decreased in size. (didn't know that could happen)

The neurologist said that it takes about 3 full months for the copaxone to take effect but could it possibly be working if the other lesions are smaller?

Is this considered a relapse?!?!?

Will he be going through these episodes this severely for the rest of his life?

when he was diagnosed the doctor said that with treatment and exercise he could go 10 years from now without even a sign of MS and now this??? Two months after his diagnosis?

And what if he finishes the oral steroids and he is still seeing double and leaning to the left. Will he be this way permanently or does this pass once the inflammation of the lesions goes away?

Welcome! I'm going to answer in chunks, if I may.

Two new lesions in a few months isn't excessive. You could go for years w/o a new one or have tons of new ones every month. Copaxone, depending on who you ask and how they're reading the source, could take 3 to 6 months to take its fullest effect. My neuro says 6, but that you should have an idea around 3. Lesions can get smaller and even disappear (become essentially invisible on MRI, but sx may remain) on their own, w/o any DMD, so that may or may not be an indication Copaxone is working.

It does sound like a relapse. Technically, they're new or worsening sx that last 24-48 hrs and (this part is slightly flexible) is separated from the last relapse by 30 days. With the double vision, vertigo ( I assume from your writing to be new), new lesions and the fact the drs put him on a round of steroids, I'd say yes, it's a relapse.

Could he have relapses like this the rest of his life? Sorry to say, no one can tell you. When your dr said that he could go ten years with out another sign of MS, that was both true and misleading in a way. Drs do a great disservice to their patients if they don't follow a statement like that with, "but he might." The blunt truth is that they can make well educated guesses based on the current science, but unfortunately current science can't give an accurate prognosis. They simply can't say what the future will hold...the most maddening thing for some of us.

Having this relapse 2 months after dx might not mean a thing. One of the other maddening things about MS is the fact that the best indicator of what a particular person's MS will do is to actually see what it will do. Drs may be concerned if frequent relapses become a pattern, but otherwise, try to ,for the time being, think of this as a one time event until his MS has something else to say about it.

Another quick relapse and/or more new lesions may mean nothing more than a new DMD. In a pattern of quick, frequent relapses after trying another DMD, a more aggressive treatment plan could be called for. You won't really know until the individual events (relapses) become a pattern. One particularly unpleasant relapse just means it's an unpleasant relapse. A series of them is another animal and you just can't tell until they happen...and that may never actually happen.

What happens if still has sx when he finishes steroids? Sorry, we can't really help there either. Results from steroids are highly variable from person to person and even from relapse to relapse within a single person. Results, if you have them, could be immediate or take months.

The key thing to remember about steroids is that they are meant to shorten the relapse by reducing the inflammation quicker than would happen if left alone. Nothing more, nothing less. They have no effect on the disease course and do nothing that wouldn't happen on its own anyway, ie the inflammation dies down and the relapse ends. The ultimate outcome of the relapse is unchanged. By shortening the relapse, you might see sx relief of varying degrees, from pretty much back to normal or none at all. Something else to keep in mind is that the more often they are used, the less effective they can become. Many drs will reserve them for only the worst relapses and some folks just don't take them and ride out relapses, no matter how bad they are.

Again, I'm sorry, but no one can tell if the sx will be permanent or not. It's not unusual, in fact, I'd say it's pretty common, to have some residual deficit...a sx that hangs around...maybe the same as during the relapse, maybe to a far lesser degree. It's also possible for it to crop back up or worsen in times of stress, illness or overheating. That would be what's called a pseudo-exacerbation and is nothing to worry about. It's not a true relapse, just a "fake" one brought on by various triggers.

The best advice I can give you is to go right now to this page:http://www.nationalmssociety.org/liv...wer/index.aspx

Sign up for the Knowledge is Power info, either email or hardcopy sent to your home. There's a lot of good info there and of course, elsewhere on the site.

For the newly dx'd:
http://www.nationalmssociety.org/liv...tep/index.aspx

I realize you both have some experience, given his father's dx, but the info absorbed is vastly different when it pertains to yourself than when it pertains to someone else, even a loved one. Pretend you know nothing and do research based on your husband's experience, not your FIL's. We all experience our own individual brand of MS...same disease, many sx in common, but effecting each of us differently.

Here's a new site from a drug co developing an MS treatment. It's not of the "use our drug" variety. It's still under construction with some presentations "coming soon", but what is there is impressive and full of good downloadable info that can be saved and reviewed at any time. The Patient Resources page has links to some great sites that provide even more info (both day to day living with MS stuff and science-y treatment/research stuff) and patient services like the MSAA's cooling devices program.

[Thomas Jackson]

I know this is really tough to deal with. It took me several months after steroids to finally get a break from double vision. I thought I was going to have to wear a patch for the rest of my life. With my MS , things have really moved slow before I've seen improvement. I'm no expert but I believe it takes time to see improvement. This site here has been as much help to me as my doctors.

[MrsBones]

Here's a new site from a drug co developing an MS treatment. It's not of the "use our drug" variety. It's still under construction with some presentations "coming soon", but what is there is impressive and full of good downloadable info that can be saved and reviewed at any time. The Patient Resources page has links to some great sites that provide even more info (both day to day living with MS stuff and science-y treatment/research stuff) and patient services like the MSAA's cooling devices program.

Sorry...in that wall of text, I forgot the final link.

https://www.msatrium.com/

[KatieDidNOT]

You have gotten some good advice in the posts above.

I would like to recommend you start posting some of your medical questions in main forum or the medication forum and ask only one or two questions at a time. That way you will get a lot more responses. This is a great place to learn about MS.

It sounds on the "relationship"-level, you are absolutely overwhelmed and stressed. Rightfully so too. Diagnosis is really hard and having a MAJOR flare right after makes it worse.

So, if you are overwhelmed and stressed, can you imagine what your husband is going through? He isn't going to be the same for awhile.

If you have the ability to call upon family members for an immediate intervention...now is the time to do so. Grandma's love babies...even two-year olds. What I am saying is maybe someone can "temporarily" focus on the baby, you focus on the job and let your husband focus on getting better...and he will get better. Most Grandma's also cook great food, make awesome cookies, play fun games and clean houses. Just a thought.

Hang in there.

And BTW...I am one of those that have had only one "major" flare in 10 years....knock on wood. Minor, insignificant flares from time to time (lasted only a few days) but I don't count those. If it does not require a trip to the hospital...doesn't count for me. Hope that makes you feel better.

Katie

[yogamama78]

thank you!

Thank you to everyone for all of your kind words, suggestions and advice. I am so happy that I can turn to this community for support. We have only told a few people because we dont need anyone treating my husband differently or asking with that sympathetic look 'and how are you doing?' Hate that!

We want to ride this out as long as we can before needing to announce it to the world. I will repost this in the main section for additional advice. Thanks again.