Multiple Sclerosis Advice/Support Needed, Please

[Elevationist]

I hope it's okay that I post this here. I'm sitting here going out of my mind with worry.

I am in a long distance relationship with a man who I love with all of my heart. We have so many dreams and plans... marriage, children, all of it. He is supposed to move here (South Carolina) to be with with me forever in June. His name is Ron, he is 30 years old. I'm Billie, 29 years old.

At the beginning of this month, during our long-awaited Disney World trip (the trip report is actually in progress and the link is in my sig, if you would like to see photos and learn more about us). It was his very first time there, he started having muscle stiffness, weakness, and a numbness. We initially attributed it to overexertion from all the walking. At first it was just his legs, then it spread up into his upper body and arms. After a few days his legs eased up, but by the end of the trip, he could barely use his hands... I was cutting his meat for him, getting things out of his wallet, etc.

When he arrived home (California, just outside of San Francisco) he saw a doctor who initially diagnosed him with mild spinal arthritis, sent him home with Motrin, and told him to take it easy for a week. That was three weeks ago, and he hasn't had any improvement what-so-ever.

Yesterday evening his mother took him to a local hospital, where they did an MRI. In the 30 seconds I was able to speak to him last night, all I got was "They think I have Multiple Sclerosis." Then he was called back in. His mother was flustered and I wasn't able to really get anything from her other than that they were going to admit him overnight for additional testing.

I am more than distraught. I've been sitting here all night reading everything that I can about the disease, both good and bad. I see that in some ways it is very similar to the illness I have been battling myself for 15 years, Systemic Lupus. I also see how in many ways it's very different as well.

The hardest part of this for me right now is just sitting here, 2,800 miles away. I should be with him, holding his hand, reassuring him that he'll be okay, giving him every bit of love and support in me. But no, I'm sitting here at this computer, going stir crazy waiting on word from him or his mother or his sister.

I have a job and live paycheck to paycheck, so just jumping on a plane isn't possible despite how much I want to. The soonest I could get out there to him would be the middle to end of January because I would need a couple pay periods to have the money for a plane ticket as well as to take care of bills while I'm gone, plus schedule the time off from work.

Right now I can't even call him to tell him I love him and am ...

... ... ...

... ... ...

....... Well. Just as I was typing that, he called. God moves in mysterious ways.

He is just now finally getting settled into him room, and he stole a few moments to call me and talk to me for a bit. The nurse came in so he had to go, said he'll call me back. I at least have the name of the hospital and is room number now, so I feel much better.

He sounds in good spirits, despite the very long day/night he's had. He almost sounds relieved to finally have a potential diagnosis. I will talk to him more later about how he's coping emotionally, etc.

Okay, well. Now at least I am not feeling so in the dark. Talking to him for those few minutes just lifted a portion of the worry and weight off my shoulders.

He said that the doctors have a very positive prognosis for him, that they are fairly certain it's MS but they have to do some more tests to rule out other things before making the diagnosis. But if it is MS, they are confident that they've caught it early and that he will be fine for many years with treatment and medication.

As I mentioned, this is the man I intend to spend the rest of my life with, so it's of the utmost importance that I know everything there is to know about what our future will be like with this disease. I know someday I may have to take care of him if the disease progresses, but he always known that someday he may have to care for me if my Lupus progresses. We're just two peas in a pod now, aren't we?

So now since I've already written all this and now I'm sitting here waiting for him to be able to call me back, I will ask... Is there anybody here with experience with MS? Either personally, or with a loved one? What can you tell me? I'm not really looking for anything specific, just thirsty for more knowledge and to hear more about what to expect and how to cope. Also, if you know of any good online resources or support communities, that would be immensely helpful as well. I want to do everything and learn everything I can in order to help him.

Thank you in advance, all.

 

[Tosie]

Big hugs to you - I'm sorry you guys are going through this.


My dh was diagnosed with MS in 1997. His began with an eye issue called optic neuritis. It appeared in Sept of 1995 (at Disney!) and we got the diagnosis in Feb of 97. Your honey is very lucky they were able to tell him what's going on rather quickly. My dh was 32 when diagnosed.

He went on medication about a year after that (we had some issues with denial, but that's another story). So since 1998 he's probably had 3 or 4 significant exacerbations (or flare-ups). The worst of them put him on IV steroids for about 10 days.

My dh holds a full time job, has coached our kids in soccer and baseball, is both a Catechist and a Lector in our church, volunteers for a number of things at our kids' school, and travels regularly. People only know he has MS when he tells them - otherwise they have no idea.

He currently takes Beta Seron (subcutaneous injection every other day) but has also been on Copaxone (subcutaneous injection every day) in the past. He also had some problems with depression (very common) so takes some medication for that as well.

It's no walk in the park - he has some numbness, pain and fatigue he lives with every day. But it doesn't keep him from doing anything.

He has to be careful in hot weather as it does make him very very weak, gives him blurred vision, etc. But we went to WDW this past August (!) and with some minor planning and a few words from him we adjusted as needed (drinking lots of water, spending more time in the AC, more bench breaks, etc.)

Your honey is so lucky he has loving people by his side - there will be many ups and down through this journey of his so be prepared. It's difficult for us, the caregivers/partners/whatever to sit back and know there's little we can do to make it better.

Keep your communication open, don't scare yourself too much by what you read on the internet and get to know other people with the diease and their families. You'll see firsthand this is not a death sentence - just a bump in the road.

The National MS Society has a lot of great info, and check your local MS groups for info as well - they often have programs for loved ones.

If you ever have any questions please feel free to PM me.

 

[Chuck-PA]

I have Multiple Sclerosis, been diagnosed since Oct 2002.
They found it while being diagnosed for some other medical problems I have. They did MRI, found lesions. Then they confirmed it with a spinal tap.
I went on Copaxone 6 months after diagnose. Doctor did not want to put me on it, but I insisted. I had one episode with Optic Neuritis during this time.
My wife and I have attended many MS seminars that the MS society and other pharmeuticals have. They are very informative and great for support when you meet others at the tables and share your "war' stories with each other.
I still work and my company is very supportive with my doctor visits and hospitalizations (for other medical conditions I have)
I travel to Disney World every year for my emotional health.

 

[starling]

I just found this forum and wow.. so sad!!

I was following your PTR and parts of your TR thread and dining experiense. Let me say I am so sorry to hear about this diagnoses, and maybe i can give you some advice because my best friends mom has MS.

She lost her ability to walk in her late 40's and they had to put her in an assisted living home in her mid-50's because she required a motorized wheelchair. she could still eat but needed heavy help using the restroom, getting dressed, taking showers and getting in and out of bed. She was still very active but needed daily help and fell often if she did try to do things herself. it was a huge struggle for her, and ultimately her husband ended up divorcing her because it was just too terrible for him to deal with.

I have gone with her to MS groups and there is a lot of support through that, a lot of kinship. If your DBF deteriorates rapdily it is going to be a lot of work on both your parts to make it work. in the grand scheme of things, if you want to take care of him it is going to be a lot more work than taking things out of his wallet and cutting his food. it is going to be things like changing his diapers, helping him shower, cooking/cleaning for him, escorting him to dr. appts and to support groups. I don't want to be a downer/discourage you from staying with him/whatever because we dont really know each other but it is going to be a LOT of work and a long road to go down. he will become dependant on you and if you grow tired of being with someone so sick and decide to leave him, he will be a lot wrose off and thats not fair to him.

SORRY for rambling, I just wanted to show you my support and let you know I have some experience with this during the "worst case scenario" and I can talk to you more about it if you like. KEEP YOUR CHIN UP!

do your research and make sure that you have plans for everything. is he going to be going back to work or going on disability?

 

[quentina]

I am with you on this.........same thing happened to my DH on Black Friday. He worked 16 hours and complained of a back ache.

A few days later, leg stopped working....hospitilized....MS (9 days after onset of symptoms).

The good news is that this is not a death sentence. With disiplined treatment, you can expect your boyfriend to live a long, normal life. Few people get wheelchairs etc anymore.

My DH will be taking capaxin. It is a daily shot with no side effects. Medicine arrived Thursday, nurse will come this week to train us.

Yor DBF will get large amounts of steroids via IV. I will tell you that we were told that how you respond to this says alot about the disorder. He will be referred to a neurologist....be sure you go to an MS specialist. Same with physical therapy, tell them you want someone experienced in MS.

If you need a shoulder to cry on or just want to vent, PM me....it is a shock at first however, keep in mind that if you have to have a neurological disorder, this is the one you want.

My hubby was told that he will WALK our daughter down the aisle (she is 7). Big thing is take the medicine....vitamins etc......also, he may need some depression meds (even if he doesn't feel depressed, it is alot for the body/mind to absorb).

 

[Tosie]

to the OP -

as you can see from the above responses there is a wide scope of "maybes" with this disease.

Every case is different so please don't let some of the above scare you. My dh and his sister both have MS and their symptoms, medication and exacerbations are like night and day.

There is some very interesting research going on all the time. In fact, there is a study going on right now theorizing that MS may be caused by blockages in the major arteries. If you'd like to read more about this just google CCSVI. Our family is following this closely.

Hope your DBF is feeling better!