And yet ANOTHER newbie. Well, it is, what it is...

New members should feel free to introduce themselves here

And yet ANOTHER newbie. Well, it is, what it is...

Postby Sarah14 » Fri Jun 19, 2009 5:02 pm

My husband was just preliminarily diagnosed with MS.

I confess...I KNOW NOTHING about the condition. I'm almost embarrassed to admit that, but I suppose you never bother to learn about something until it becomes a part of your sphere...and then, you can't learn quickly enough!

My husband has had problems with numbness and tingling for years...but the doctors always assumed that was due to his spinal fusion, and a worsening condition.

Now, literally overnight, he lost most of the sight in his right eye. He was devastated, and we've all been extremely worried. The prelim. tests indicate he probably has MS.

So...what do I need to know? The doctors are talking about putting him in the hospital for 72 hours of IV steroids, so that they can temporarily restore his sight.

Has anyone had an experience (well, I'm sure you have) with this?

Please refer me, email me, direct me...

sadieleebock@gmail.com

Thanks,
Sarah
User avatar
Sarah14
Newbie
 
Posts: 7
Joined: Thu Jun 18, 2009 3:00 pm

Advertisement

Re: And yet ANTOHER newbie.

Postby NHE » Fri Jun 19, 2009 6:08 pm

Hi Sarah. Welcome to ThisIsMS. I believe that you will find a supportive community here.

Now, literally overnight, he lost most of the sight in his right eye. He was devastated, and we've all been extremely worried. The prelim. tests indicate he probably has MS.

So...what do I need to know? The doctors are talking about putting him in the hospital for 72 hours of IV steroids, so that they can temporarily restore his sight.

Has anyone had an experience (well, I'm sure you have) with this?


It sounds like he's having problems with optic neuritis. This is also what led to my diagnosis after having a month of pain and numbness in my leg and foot. My optic neuritis came on pretty quick as well. I had a couple of MRIs and some other tests which confirmed the MS diagnosis. The IV steroids will knock down the inflammation pretty quick. I started to get my eyesight back in just a couple of days. However, I should note that it did remain sensitive to heat, e.g., hot showers and hot days around 90-100°F, for about a year afterwards. However, the problems (cloudy vision) went away almost as soon as I got cooled back down. I also noticed a difference in color intensity from one eye to the other but I don't notice it too much anymore nor is my vision affected by heat any longer.

NHE
User avatar
NHE
Volunteer Moderator
 
Posts: 3144
Joined: Sat Nov 20, 2004 4:00 pm

Postby cheerleader » Fri Jun 19, 2009 6:22 pm

Sarah.....
welcome. Sorry you find ourself here. It's overwhelming. I know exactly what you're talking about. All of the sudden you're supposed to learn about this disease. I knew zero when my hubby was diagnosed- it's a pretty rare diagnosis. But it sounds like your husband is being taken care of. The steroids will calm down the inflammation and should restore his sight. My husband had numbness and tingling on his left side, and the steroids knocked it back two years ago. He's been good since.

Hang in there. You won't learn everything overnight, there will be time to learn more...and NHE is right, whatever questions you have, there are alot of supportive folks here. Hoping your husband gets relief and healing-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 4939
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby catchesya » Fri Jun 26, 2009 7:55 pm

I presented with loss of sight in my left eye and it stunk. I was a guinea pig for 3 different doctors and I can now say that I can give some solid advice.

They are probably going to put him on Solu-medrol. This medicine is typically the saving grace and sight should come back. My sight came back after 30 days.

I have been through 3 different IV nurse companies. It is great, they come to your house, insert the IV and leave you to your own devices. The medrol is a trip though... For me I can not wait to remove the IV. I finally became comfortable with a company called Collins IV Care. I think they are the best in CT and provide second to none service. On top of that, they provide the patient with the medrol in a "baby bottle" delivery system. It works on vacuum pressure to deliver the medication and you do not have to walk around with an IV bag and pole. You can actually live during the hour it takes to seep.

Medrol is very weird, at least for me. I cant sleep, get dehydrated and loose my taste buds. It only lasts about a day after the IV is removed. But, it helps. It is like knowing you have to walk through the desert to find an oasis. I am sure everyone is different, but it does have side effects.

Also, if he has to get a spinal tap. Make sure you tell the doctors they must give him a "Blood Patch." I made the mistake of failing to require it and I lived in hell for 2 weeks because I had to travel for work and the hospital that I was near could not perform the procedure.

Basically, by them draining the fluid, your body cannot replace it nearly fast enough to avoid the possibility of the most terrifying headaches I have ever experienced. It lasts anywhere from a couple of days to weeks on end. I drove a route that would normally take 3 hours to get home the day before my patch. It took me 12 hours because I was unable to sit up and or stand. I literally was on the verge of blacking out from the pain every 15 minutes and had to keep pulling over.

I don't mean to be dissuasive but if I can save one person from the hell I went through, well then be it. If you want, he can PM me to talk further. I along with many others had an experience(s) that probably could have been avoided if we knew who to ask and how.

Let him know that life doesn't end in fear, it begins today and everyday he is willing and able to take a breath, take a step and of course laugh.
Mr. Pickles. I wake up everyday trying to figure out how my life turned out to be blessed with MS. :o)  I often believe it is God's way to prove to the masses just how strong we are.  MS sucks, but it will never beat me.<br />
User avatar
catchesya
Newbie
 
Posts: 8
Joined: Thu Jun 25, 2009 3:00 pm
Location: Connecticut

Postby Sarah14 » Sun Jun 28, 2009 6:26 pm

Thanks, catchesya.

I'll pass on the information. He'a diabetic, and the first thing we've noticed is the skyrocketing blood sugar numbers. He's been in the 400's. It's really distressing!

And yes, you were right. He's on Solumedrol, IV. It's been...an experience. As I said before, his blood sugar is surging, and he's extremely irritable. And he's also frustrated, because I think he convinced himself that his eyesight would return immediately...despite the medical evidence.

And, thank you for the head's up, on the spinal tap. It sounds as if it must have been a horrifying experience for you. I'm truly sorry you had undergo such pain and suffering. :(

Blessed are you, catchesya, for you are reaching out to others, and that always reaps tremendous benefits.

Sarah
User avatar
Sarah14
Newbie
 
Posts: 7
Joined: Thu Jun 18, 2009 3:00 pm

To Sarah

Postby lyndacarol » Sun Jun 28, 2009 7:16 pm

Sarah -- about your husband's situation you have said:
He'a diabetic, and the first thing we've noticed is the skyrocketing blood sugar numbers. He's been in the 400's. It's really distressing!

I assume he is a type II diabetic. That form of diabetes goes by several other names as well -- insulin resistance, hyperinsulinemia, metabolic syndrome. This is marked by a high glucose (blood sugar) level AND a high insulin level.

I happen to think that a high insulin level is fundamental to the MS cascade. For that reason, I encourage folks to request a "fasting serum insulin test" -- perhaps your husband has had this done?

By the way, Solumedrol is a glucocorticosteroid; it raises the glucose level -- not a good idea for a diabetic. In fact, the incidence of diabetes is higher among people who get Solumedrol.

At the very least, this would be a good topic of discussion with your husband's doctor. And something to watch.
User avatar
lyndacarol
Family Elder
 
Posts: 2089
Joined: Thu Dec 22, 2005 4:00 pm


Return to Introductions

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users