Just found out hubby has MS

FitMom

FitMom

Cathlete
I just found out this afternoon that my hubby, Jason, has MS. My heart is breaking for him. Since you all are such an "educated crowd" on so many things, I was wondering if anyone here knew anything about the disease. The Dr's office won't give us any information until after his spinal tap on Wednesday. I'm looking around on the internet for information too.

I am just so stunned!

TIA
 
Hi!

I'm sorry to hear that. There are definatley some good resources on the web. I can't help you with info but I'm sure someone else will. Best of luck to you both.

Cathy
 
Fitmom,
First and foremost, I'm so sorry. For him AND you.
Second, I can not believe the dr. would not tell you anything.
Why does he need a spinal tap? Do you mean a MRI?
I never heard of getting a spinal tap to figure out what kind/how bad the MS is.
Let me first tell you this, my boyfriend has had MS now for I believe close to 8 years. I've been with him for 7, so I've been right there in the thick of it. And know much about this subject - unfortunatly.
Looking on the internet is a good thing, but also a bad thing - MS can get really scarry!
This site is the best to find out anything and everything:
http://www.nationalmssociety.org/

fitmom - there so much on this subject I've experienced, I can really help you if needed, so if there is a specific question or questions you want to ask, please do no hesitate to ask here or e-mail me. It's just really hard to tell you about MS without writing a book!

We all need to stick together in times like this!

I don't know what kind of Dr. your husband saw, I assume it was a neurologist, but I would definitely recommend a new one. He should at least, at the very least, given you some pamphlets to read, and not let your husband or you leave his office without a clear understanding of what this disease is.
The only reason I could see the Dr. hesitating to tell you about MS, maybe he wanted to find out what kind of MS your husband has. But still that is NO excuse. This is your husband life we're talking about here and he has a very tough road ahead of him. The last thing he needs is a dr. not giving him a complete explanation.

Fitmom - my heart goes out to him and you
I will keep you in my prayers

Terri
 
Hi Alli,
I agree with Terri. Ask lots of questions and get a second, even a third opinion.
A dear friend of mine at first was told he had MS. It was a wrong diagnosis and it cost him valuable time to be diagnosed later to have Lymes. He forgot that while loading a deer, he was bitten by a tick. (he didn't know he got bit at the time.) He had all the symtoms of MS and the Doctors would get mad at him when after remembering about the deer, would dare to question their opinions. The time lost make the Lymes progress rapidly in his system.

I don't mean to question whether or not your DH has MS, only to get more opinions and do your research. I hate it that we have to know more about the subject than the doctors in order to get straight answers!
When I go to my doctors, I take loads of material with me. Lots of it that I found on the internet. This knowledge helps me to know what questions to ask. It makes them sit and and take notice. It makes them know they can't beat around the bush with me.

I'm so very sorry to hear of your bad medical news. I sincerely hope the doctor was wrong. But if he's not, sometimes knowing what you are up and against and how to fight it can be a comfort.
My thoughts are with you, as are all of your friends here.
 
Hi - I'm so sorry to hear that :(

Did you read the thread in this section about "Does anyone Here have MS?" - just a thought, I believe it's written by someone on the board who has it. I didn't read thru the thread, but it's still on the front page of threads.

I hope everything works out ok for him.
 
Alli,

Wanda is exactly right about getting that all important 2nd opinion. Your insurance is obligated by law to pay for a second opinion. Your primary doctor has to provide a referral but get it done! Bring your husband's medical records with you but get that opinion.

Wanda also spoke of a friend having been diagnosed with MS only to find out later it was Lyme's disease. That actually happens quite a bit. Do a search on webmd.com on both illnesses. The symptoms are so similar it's scary.

I'm sure you are both in quite a state of shock & my prayers will be with you.
 
Thanks Terri.

Yes my hubby saw a neurologist. They offered to send us some information when he was on the phone with them setting up the spinal tap. She did say that if we had access to the internet, it would be just as good. I'm with you, I don't like how this is being handled by them at all. Hubby wants to just stick with it for now. I'd like him to visit Vanderbilt (we're in Nashville) which has an entire MS department. I think hubby should be brought in the office and explained to exactly what it is that's happening. How many steps there is and what they're looking for. But, I'm not going to push him....for now.

He had the MRI done on Friday. He's having the spinal tap (AKA Lumbar puncture) done tomorrow in order to rule out any other diseases that might be masking themselves as MS. Of course, I found this out via internet, not the Dr's office. They will also be drawing blood for extensive blood work.

I am reading so much on this, my eyes are about to fall right out of my head. The National MS Society now has a "Knowlege Is Power" information system. I get an email every day explaining a little bit more about MS. Very clever really.

How lucky your bf is to have you! I appreciate your offer to email you. I may just take you up on that :)

Thank you so much :)
 
Thanks Wanda,

I believe that's why they're doing the spinal tap tomorrow. To rule out any thing else it "might" be. Plus he's going to have extensive blood work done.

I'm gathering as much information as I possible can on this. I'm like you, I want to be armed with as much info as I can be. I'll probably embarrass Dh but that's ok...lol
 
Thanks Deborah (btw, that's my first name :) )

I hadn't even thought of webmd. Duh!

I appreciate your prayers. We need all that we can get :)
 
Hi,
I'm so sorry to hear your news. I, too, have MS. I have had several MRI's, visual evoked potentials, work, and also a Spinal Tap. The Spinal Tap can tell them several things. I have a couple of lesions/plaques on my cervical spinal cord and there were a few things that were elevated on my Spinal Tap. That along with findings on exam and my symptoms, gave me my diagnosis. I am now on Avonex which I inject every week. I am doing pretty good so far. I used to do exercise pretty regularly and then got off track and got busy so I gave it up. Then I found out that I had MS and on one of my visits, the doctor said I had to get into some type of exercise program because of some weakness in my leg. So, I got back into exercising and got into Cathe and now do stregnth training 3 times a week. I feel that has helped me and will continue for as long as I can.

If you would like to email me, feel free. I can imagine how you feel, I remember getting the Dx just like it was yesterday. I was totally devastated. Especially, since I originally thought I had Carpel Tunnel Syndrome. Talk about turning your world upside down.

My email address is [email protected]. I think it is wrong on my profile, so it won't work to click on the "email author" icon above.

My thoughts are with you

Roylene
 
Thank you for your reply Roylene.

How are you doing? I'm sorry to hear that you have MS. Good for you on getting back to exercise! I'm trying to tell Dh about how much that seems to help. I know Montel Williams works out all the time. He says it really helps him, even when it hurts.

Thanks for your email address. I will email you :)

Thanks
 
Fitmom -

Did your DH ever get his diagnosis? I have a special interest in this topic now that I think I could have it too :-(

I go for an MRI in 1-1/2 weeks.

If your DH got his diagnosis, did they say what kind he has? I read the post from Dana, who is very inspiring, seeing how he has the progressive type, which scares me out of my wits!

It sounds like everyone has different symptoms.

Mine are the Optic Neuritis, and numbness in my lower legs/feet and crotch area to be blunt!

I want to do my Cathe tapes, and tried C & W the other night. I think I'm going to take it slow, I only have taken maybe 9-10 days off, but don't want to totally lose all my endurance I had built up, but on the other hand, don't want to screw up my eyes!

The optic nueurits seems to be better, and thank God, it didn't get too bad, but bad enough (along with the numbness), to make me see an opthamologist. I had blurry vision for 3 days, and it went away. I still have the pain, which is why I'm afraid to push things with Cathe. I don't know enough about that condition to know if I can make it worse by elevating my heart rate & body temp. I think I read that with it you can have blurry vision after exercising or hot shower, but it didn't say anything about really making it worse.

I think I'm rambling here, I'm just kinda going nuts and I remembered these threads. I can't get into a neuro yet, my family doc is back in the office tomorrow, I'm calling them. My opthamologist is the one who scheduled the MRI.

I'm just playing wait & see right now.

Thanks!
Kathy
 
First I think that the best place to check out information, and breaking news is
NMSS.com (National MS Society), they have lots of information

2nd --> Dump the doctor, when my doctor discoved he though I had it (and unfortunately I do), he sat down and answered my questions for an hour, and he stayed late to do it, so I could talk to him 2 days after he told me)

3rd--> it is not a death sentence, it feels awful, and it is hard to accept, but you can call your national ms society and they should be able to council you are reccomend a counselor).

4th--> this affects you too, do not diminish your role, and your fear, you can get counseling too, and if you feel you need it, you should

Please PM me if you need anything, or have any questions!
 
Cyber hugs to you sweetie! You and your family are in my prayers. I agree with the others that a 2nd opinion is good. My hubby's best friend from birth was diagnosed with MS over 2 years ago (a mild form??) and is doing great. I don't know that much about it and wish I did. All I can offer you is my prayers and love. Be strong and pray. God works in amazing ways and rarely gives us more than we can handle. Best wishes to you and your family:)
 
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