Newly Dxd MS

[bamabelle]

My husband, at 36, woke up on 3/26/13 at 4am, paralyzed on his left side. One panicked trip to the ER and an overnight stay with lots of diagnostic tests led us to the diagnosis of MS.

I'm an MRI tech and knew what MS plaques looked like, but that was the extent of my knowledge. That led me to this website. My husband isn't so keen on reaching out for help or questions, so here I am, absorbing as much as possible.

On a side note, he has some of the LARGEST MS lesions either myself or Radiologist have ever seen. "GO BIG OR GO HOME" right? He's such an overachiever!

Thanks to everyone for sharing your information and experiences. It's all been very helpful in guiding us through this crazy journey.

Hope you all are having a wonderful Sunday.
Best Wishes

[22cyclist]

Bamabelle: I am glad you came here! I am so sorry about your husband. As a nurse, I know it had to be shocking to you to see his films. Did they give him any IVSM, and did his paralysis get any better?

Please do hang around here. We need your expertise with MRI results and MRIs in general, mostly on the Limbo Landers site.

Hoping things get better,
Lisa
Moderation Team

[JerryD]

Sorry to hear the bad news about your husband. I am sure with your medical experience, you are in a good position to be of great resource to your spouse.
Now that you have seen his pictures, have you seen his vitamin D, B-12 and magnesium levels? You have to know this disease , inside and out. By finding us, I think you have done a 'great ' thing for your husband. Ask him to join us. We'd love to welcome him. Good luck

[Alicious]

Hi bamabelle

Welcome to MS World! I hear you on large lesions--at diagnosis I had one in my c-spine that was 17x4x5mm. It has since healed up pretty much entirely; it cannot be seen on an MRI. I'm not saying that to give false hope and certainly not to compete, but just to say that MS is tricky, but sometimes things improve.

I'm so sorry you and he are dealing with this, but am glad you found us.

[bamabelle]

22cyclist:
His left side deficts are still ongoing but have improved probably 80%. He did have his IV steroids on outpatient basis. We were in the ER getting a steroid treatment on Easter morning. I think we were in the beginning stages of the greif process then, possibly denial and shock. He can type emails for work, which is a miracle, he can even play guitar, his favorite stress reliever. He still has a left side foot drop, and has been using a cane for support. We are one month since the original onset of symptoms and I worry he's giving up hope of it improving any more.

He will start a DMD soon. Neuro says it will likely be Rebif. I'm trying to keep him positive and only have my "nervous Nelly" breakdowns when he isn't present.

Thanks for replying. It's easy to feel so isolated and confused with this diagnosis. I'm reaching out to every resource I have to absorb, learn, and apply everything I can to help him to continue to have a wonderful life.
Best Wishes

[bamabelle]

JerryD:
We visit the Neuro in a few weeks and plan on requesting these levels and to actually review the report myself for help with interpretation here. I have also gotten a suggestion to have him checked for NMO. All are great ideas. He has started calling me "Nurse Wratchet" because of all of the vitamins I am forcing him to take. He's never had any medical issues.

Alicious:
I have tried to find the humor/comedy in any aspect of this disease. I don't mind a "friendly competition" of lesion sizes. If you can't brag about it -you over achiever- what can you do? He woke up a few moments ago and said he has more feeling in his foot (the foot drop side), than he has since prior to the attack over a month ago. No reason not to have hope. If you lose hope, you lose your fight to survive.

Thanks for the warm welcomes. I am here for any help I can possibly give regarding MRI questions. If I don't know the answer, I can certainly try to find it. I work for Neurosurgeons!

[Alicious]

I am so glad to hear his foot is doing better! That is wonderful! Hopefully now that he has been diagnosed and can get on meds and keep this dumb disease in check. One month feels like forever, but healing with MS can continue for a year or more, (I always forget if it's 12 months or 24 months) so I'm betting he will regain quite a bit more function. It's hard to have faith in that, I know.

If competition helps, tell him I'm racing him to health. I'm having some issues with one leg the past few days (calf tightness/spasticity), so the race is on.

[bamabelle]

2 steps forward and 3 steps back

Alicious:
He did have improvements yesterday, momentarily. He soon lost it and said his "cog fog" was worse than ever. I can only hope that means lots of remyelanation and healing going on. But it was nice to have improvements, even for a moment.

He also became very depressed yesterday evening. He's tired of being tired and tired of dealing with the MS. I believe he's in the final stages of the greiving process. With my first-hand patient experiences with MS, I know some of what lies ahead and try to keep that tucked away, but it definitely gets me down.

I stay as upbeat and positive in front of him. I only allow my personal greiving when he's not around. I figure he probably feeds off of my reactions and me staying calm and strong can only help him be stronger. He is my bestfriend and is a great friend to everyone he cares about.

I've always admired his giving and caring nature towards people. He's the type that would give you the shirt off of his back, even if you had never been a good person yourself. He sees the good in everyone.

I'm always a skeptic and pesimistic in those circumstances. He deserves the best life that I can help give him. Thank you again for listening. It's nice to have a platform to share my experiences and emotions on. I know you all have been in our shoes and I have such high hopes listening to your stories..

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[rdmc]

Hi and Welcome!

Glad you're looking for info and there's no better place to plug in with others in the same situation than this board.

As has been said by many , the first year is the hardest on so many levels. Plus his diagnosis was such a shock to you two, that it's got to be overwhelming. A lot of us went through a prolonged diagnostic process, and sort of figured the diagnosis was coming, so not such a surprise.

With large lesions, you may want to seek out an MS Specialist, and as you mentioned have them rule out other MS mimics.

As an MRI tech, thought you'd be interested (possibly encouraged) to see this link. I've posted it before, because it amazes me. 24 MRIs in one year, time lapsed together, the patient had no relapses during the year and experienced no new symptoms...and yet, as you'll recognize, he had a lot of "stuff" going on. Proves the theory that an MRI is really just a snapshot at that moment.

Here's the link:

http://www.msdiscovery.org/news/news...more-meets-eye


Hang in there.

[bamabelle]

RDMC:
That is a very interesting article. I only glanced over it and viewed the seriel imaging. I am definitely going to review it further tomorrow. Thanks for sharing that.

It also gives me more ideas on how to turn my hubby into a guinea pig. I've already stuffed him in my scanner many times and still need to do some spinal scans to check for spinal lesions. He just isn't very cooperative.

Not sure it matters to him if he has lesions in his spine. I'm always curious if his lesions are changing in size. He just isn't.

[MyGirlsMom]

Bamabelle, so glad that you found MSWorld. This forum has been a fantastic place for information and support during my last four years since diagnosis. My heart goes out to you and your hubby to live with this disease. It is a tough one as many symptoms are not visible to others (both a blessing and a curse.).

The first year is definitely the hardest and you can expect a roller coaster of symptoms as well as stages of dealing with the MS. Each person is different, so my advice is hang on for the ride. My husband has been through my emotional ups and downs and I know it is not easy for him either. We both have to live with my MS differently.

Like another poster said, it can take a long time to heal from a flare, but do not give up hope!!! Before I was diagnosed I had a significant left foot drop for a couple years. (It wasn't even what got me to the doctor, I just thought that I just had a slapping foot...didn't really think to think that was not normal and could be serious.). Anyhow, I went to a neuro PT for physical therapy and my drop foot is no longer. I still do trip from time to time because I don't always get the left toe up high enough, but it has improved to where most people wouldnt know it is an issue.

So, please tell your hubby from me that he must continue to hope and keep moving. I truly believe that exercise has been the most important therapies that i give myself, even more than my daily Copaxone shot. Many blessings to you and your dear husband.

[aitch10]

Welcome! Sorry you have to be here though and hope your husband's doing okay with his DX.

[MSwhileOverseas]

Your husbands story sounds very similar to mine. I am 37, on 2/11/2013 I woke up with pins and needles in my left foot and hand by valentines day I had severe double and blurry vision. I could not move or feel my left foot at all and had foot drop. I could barely move or lift my left hand. The cog fog was horrible.

MRI showed three active lesions and several more in active lesions. I received IV steroids and all though it stopped my symptoms from getting worse it didn't seem to me like it helped improve them.

Fast forward three months past diagnosis and I am about 90% recovered but it took a good two months before I really started to feel decent. I could not pick up my 10 month son for over a month and still to this day can only do it for short periods of time. Now I feel the best when I find the right balance between rest and staying active. Fatigue is still a big problem for me.

Also I have been on rebif for two months and besides bruises at injection sites and the occasional body ache, which Advil takes care of, I have not had any problems with it.

I am not sure if its just a coincidence or not because I know rebif is for long term treatment but I had a lot of improvement in symptoms the week after I started it.

The first two months was the hardest but it did get better for me. This whole MS thing is new to me but just wanted to share my experience and hope for a speedy recovery from this attack for your husband.

[bamabelle]

MSwhileoverseas:

Your story is very hopeful for us. He seems to have lost hope for any further recovery. In fact, he's actually having some very emotionally tough moments this week. I can tell he is over the whole thing. I totally understand his natural reaction to the slow progress.

I am trying to be positive for him and give his leg, arm, and neck as many massages as I can at night.

The exhaustion is overwhelming for him.

We go next Friday for his next official MRI, then 2 weeks later to hopefully get him on a DMD. His doc thinks he should start on Rebif. I see no reason at the moment to disagree.

Thanks again to everyone for the warm wishes. I'm just trying to make sure he keeps taking his Vit D, fish oil, and multivitamin for the moment. He's not one for taking any type of medicine, especially a daily regimen of them!

[CaroleL]

Hello and Welcome bamabelle!

Recovery is soooo possible! I was bedridden for months and couldn't even transfer to a wheelchair on my own. I now transfer easily and am learning to walk again. I can take a few steps with my walker. Walking was only a dream.

Tell your hubby to never give up. In the beginning it's such an emotional roller coaster and hopes and dreams seem to vanish. Throughout the grieving process, you feel like you've lost your life. Once we accept our limitations, we can redefine who we are, redefine our lives.

I finally accepted my limitations and yet they seem to change. MS is so weird that way. You get used to something then it changes. My changes lately have been good ones. I wish the same for your hubby!

Best of wishes!