Frustration. : It’s been almost three... - My MSAA Community

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Frustration.

Smartcloud1981 profile image
21 Replies

It’s been almost three months since I’ve been off meds and two months since my insurance approved the infusion. I’ve call once a week for three weeks to find out what’s going on. All I get is the lady responsible for scheduling is working g on it. Called last week to ask again was told she wasn’t there till Tuesday and did I want to her to call me when she’s back. I said yes because things are progressing and I want to know where I stand. No calls yet. Meanwhile I’ve had minor flares. Right Leg is heavy and I have to concentrate when I use it to much to make sure it moves. Fatigue is worse then ever. Neuropathy occasionally in my hands. I’m so frustrated with this process. I told my neurologist this is the first time in two years I’ve been scared.

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Smartcloud1981 profile image
Smartcloud1981
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21 Replies
greaterexp profile image
greaterexp

I’m sorry for the frustration and the fear you’re feeling. Wheels tend to grind slowly, but the squeaky wheel gets the grease, as they say. You’re wise to continue making calls to anyone involved in the process to keep them actively doing their job.

Please keep us posted.

Smartcloud1981 profile image
Smartcloud1981 in reply to greaterexp

Finally got ahold of the person I needed to. Everything is now scheduled.

greaterexp profile image
greaterexp in reply to Smartcloud1981

That’s terrific! Thanks for letting us know.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Hang in there Smartcloud1981 and keep calling them! Then call them again! ☺️ I'm glad you told your neuro maybe he/she can do something! Be positive! It will happen!🤗💕

Smartcloud1981 profile image
Smartcloud1981 in reply to Jesmcd2

My persistence paid off called today was finally scheduled

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Smartcloud1981

Way to go!!! When's your appt? 🤗💕

kdali profile image
kdali

Oh no 😞 Perhaps the stress of the wait is causing the flares. I hope you hear something soon!

rjoneslaw profile image
rjoneslaw

I pray things get resolved. Does the drug company have a patient assistance program that can help with scheduling the infusion. Ocrevus does

Smartcloud1981 profile image
Smartcloud1981 in reply to rjoneslaw

Finally was scheduled today.

rjoneslaw profile image
rjoneslaw in reply to Smartcloud1981

great good luck

Raingrrl profile image
Raingrrl

How stressful! Stress always causes my symptoms to flare up. Keep calling them as frustrating as it is. Hopefully they will schedule you soon. Two months is a ridiculously long time to wait to be scheduled. Is there another infusion center you can go to? Can your neurologist help move things along?

Smartcloud1981 profile image
Smartcloud1981 in reply to Raingrrl

Got scheduled finally just took persistence

Keep calling!

Weldon60 profile image
Weldon60

I feel for you. Dealing with systems can be frustrating.

Texandyroe profile image
Texandyroe

Smartcloud1981 , I don’t know what infusion you are waiting to get, but if you can call the drug company’s patient assistance line, maybe they can help you. I had a nearly 3 month delay in getting my Tysabri infusions, due to insurance changes, and finally called my Case Manager with Biogen and by the end of the phone call. I had an appointment for the next day!

Smartcloud1981 profile image
Smartcloud1981 in reply to Texandyroe

Finally was scheduled appointment in a week

Texandyroe profile image
Texandyroe in reply to Smartcloud1981

Oh, thank goodness!

mrsmike9 profile image
mrsmike9

Can your neuro get things moving?

hairbrain4 profile image
hairbrain4

Ditto mrsmike9buffering. The neuro's office can usually get better results. I always have them make any appointments needed, I learned that long ago.

Smartcloud1981 profile image
Smartcloud1981 in reply to hairbrain4

Was finally able to talk to the person I needed to. I just think the secretary was not giving my messages to the right person. I will have my first 1/2 dose in a week

hairbrain4 profile image
hairbrain4 in reply to Smartcloud1981

Awesome! I hope it helps you as much as it has helped me. I had no side effects & I am off all of my MS meds other than Ocrevus. Most of my symptoms are now gone & I have energy! I had my first full dose in April & still doing great. Good luck!

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