I don't know what to do

[DancingOnTheEdge13]

I am having a relapse. I have not been able to work in 2 weeks. I have having mobility issues. I can walk short, a little around the house. This is my worse relapse since being dx'd in 95.

I seen my neuro Thurs. (four days ago.) He was having his nurse set me up for the Solu Medrol IV. (My neuro is in Waco, Tx which is 40 miles away) So I asked that it be set up at my local hospital. He said ok. I came home and waited Thursday afternoon and all day Friday and heard nothing.

So at 9:00 this morning I called his office. They said the nurse should have set that up and called me. Well, the nurse gets on the line and tells me she will set it up.

She called me back and told me that my local hospital does not do that. So I asked about the hospital the next town over. She said she would call me back. When she called me back, she said they do not do it either and that I needed to come back over to Waco to have it done. I need to be at the hospital at 1:00 this afternoon.

I can't drive. DH is working and can't take off. He told me to reschedule for tomorrow. I called the nurse back and asked if she could do that. Instead she gives me the number to the outpatient office to set up another time myself.

No problem. I called the outpatient place and told them my problem. That was when I found out that it is a three day ordeal (I knew that it was for three days but did not know that I have to come in every day)

I have never had this done before so I was completely ignorant to the whole process. We do not have the money to go back and forth like that. My neuro has me coming back to him June 17. I am off work until then. I work for the school district. Thats the rest of the school year. So money will be even tighter.

So is my only choice is to sit back and let this relapse ride itself out?

I don't even know why I am posting this. I am so frustrated. I feel totally helpless. I just want to find a hole and crawl in but I don't have enough strength to search for one, muchless pull the dirt over on top of myself.

[jazzgirl]

Very frustrating, Patience! Will your insurance allow for a nurse to come to your house every day to do the infusion?

I always used to do them by myself for the three days AFTER the nurse put the heplock in my arm, but since this is your first time it's probably wise to have supervision.

Tell them that you can't be there every day, and make it clear that you have to have this intervention. Make them come up with a solution! [there usually is one!!].

Good luck, and keep us posted!

[mjan]

OH dear HUGS!!

I agree there IS a solution. I would call your insurance and tell them how they will help problem solve. I think the home RN IV is best..so ASK for it. I had mine done inpatient cuz they had to monitor other medical conditions along with the IV and it was a good thing I did.

So no hospital closer can admit you for IV solumedrol?

Let us know ok hon?

Warmly, Jan

[heliotrope]

Okay, this may be out there... but find out if there is a cancer unit in the hospital. They often have volunteer drivers for chemo appointments. Call their program and see if they can sneak you in.

[0485c10]

40 miles away with you having transportation issues for the three days? 40 miles is not that far away--my relatives live farther than that & my parents don't have any issues with drivng there at the drop of a hat. if your husband has difficulty getting off work--there is oral prednisone too you could take at home. unless its not an issue for your husband to drive?

i have read there is no difference in the outcome of oral steroids and IV steroids except for optic Neuritis. The study that i read said that ON apparently needs the faster delivery system of IV delivery right to the the vein. the article speculated that it was because ON was the only nerve lying entirely in the brain and need this faster delivery system of IV steroids, but other relapses respond just as well to steroids going through the digestive system first before they get into the blood system.

i refused IV steroids once when the doc asked me to do them. he warned me he was gonna hit me with a strong dose of prednisone. since then my relapse have been ON so i do IV steroids. the oral prednisone he prescribed--and it is a capital M not a small m. MEGA as opposed to mili. so large doses of steroids can be prescribed orally--you just may need to take a zantacjh if your stomach gets upset.

call the nurse back & ask if the doc can prescribe oral prednisone instead because of your transportation difficulties. for me the doc prescribed this when i said no to IV steroids.

20 MG Prednisone a total of 33 tablets.
4 tablets for 3 days
3 tablets for 3 days
2 tablets for 3 days
1 tablet for 3 days.
1tablet every other day for 3 days.

[0485c10]

Oral steroid just take a little longer but if your not going back to work any way, perhaps you can afford this extra time?

[centerles3]

You have to learn to be you're own advocate. I know it sucks right now to be you but nobody else will help you but yourself. If you're having an exacerbation, you should be able to walk into any emergency room and get solumedrol IV's.

[Lendi]

I'm so sorry you're going through all of this. It's hard when you're basically stuck in any direction you go in. I hope all will work out for you, though adn you'll feel better soon.

[GEM]

Our church provides drivers for medical purposes, if you go to one, check to see if they have such a program of volunteers.

[salamandertom]

Oh man, I am sorry. I live 2 hours from my neuro, drove to see the neuro-opth today. I am lucky enough to be able to get my solumedrol locally though. I am sorry you cannot. I don't understand why. That stinks. I would ask about the oral steroids and I would ask if there is a hostel for patients needing care at the medical center. At my hospital there is one, and it is $15 a night. I had to stay there once. It wasn't perfect, but I had to and it worked. It was two miles from the hospital and there is transportation to the hospital. I would look into it. HUGS and good luck.

[Thinkimjob]

IV 'roids do work faster, but the oral stuff is OK. My doctor has something or other, steroid of some sort, she can inject during a normal visit. One needle, works a treat, then tablets.
The nearest neurologist to me is 420kms away. Don't know what that is in miles.
It's a bugger, if you can't drive. I think your dh is going to have to "cowboy up".
Mind you, from my limited understanding, you're probably too far into the flare for the steroids to do much good, and you might be just as well riding it out.

[NYJenn]

I agree that you should have the doc call in a script for oral steroids. Plus, if you have private health insurance, they may pay for a nurse to come to your house and adminster the IV. Be pushy about it with your insurer or neuro.