Not Again

[mbrooks20]

I just got out of the hospital a couple of days ago. The steroids wore off and now my fingertips are tingly and numb. I am seeing double at times my arms and legs are weak. I keep falling over and walking like a drunk person. My lips are also tingly and numb. I have lost all bladder and bowel control. I have been in and out of the hospital since July due to these exasperations. This is the longest it has been going on but this time I told my husband I'm not going back to the hospital/ I have been on so many steroids I have what the doctors call a buffalo neck. It is were you swell around the sides and back of your neck. Has this happened to anyone else?

[Juleigh21]

I don’t know what that is. I am so very sorry to hear about everything you’re going through. 🙏 Hope you start feeling better very soon!

[mbrooks20 in reply to Juleigh21]

thank you

[greaterexp]

I'm sorry you've had such a rough go for so long. Does the doctor feel the hump will go away when the steroid use is stopped altogether?

[mbrooks20 in reply to greaterexp]

They said it will slowly go away since I'm off the steroids but they want to put me on more IV Steroids because of the exasperation. The only problem is that once I finish the IV Steroids I will have another exasperation within a week of finishing it. I am thinking of sucking it up unless it gets too bad just to get the hump to go down. I told my kids that I was hoarding food and water in my neck and that is why it is swollen.

[PWilli in reply to mbrooks20]

mbrooks20 , please don't give up on the steroids! I was on high dose steroids for 1.5 years as a child for another autoimmune disorder. And yes, I did have the weight gain, hair growth, buffalo neck BUT it did go away. Please take care of yourself and don't suffer any more than you need to! Hugs.

[Juliew19673]

Sorry to hear of your trials, but I am sending you hugs! Hang in there!!

[mbrooks20 in reply to Juliew19673]

thank you

[Jesmcd2 CommunityAmbassador]

I'm really sorry your going through this mbrooks20 😕 wish there was something to do to help.

Please if it doesn't get better, go back to the hospital! 🤗💕🌠

[mbrooks20 in reply to Jesmcd2]

I will thank you

[bxrmom]

Sorry to hear you are going through this mbrooks20 Did your dr give you a taper after the solumederal? Keep us updated when you can. And if this doesn't go away, please go to the hospital or call your doctor.

Jessie

[mbrooks20 in reply to bxrmom]

yes he did every time

[hairbrain4]

Sorry to hear you are having so much trouble. Are you on a DMT other than steroids? Prayers going up for you.

[mbrooks20 in reply to hairbrain4]

No we are fighting with insurance so I can get started on Ocrevus infusions

[hairbrain4 in reply to mbrooks20]

Have you cantacted the drug company Genentech as they do help pay for it. They have a coupke of different programs even if you have insurance.

[mbrooks20 in reply to hairbrain4]

they told me to wait and see what my insurance is going to do.

[hairbrain4 in reply to mbrooks20]

Gotta love the insurance companies, they think they know more than your doctor does... -NOT!

[LissaH]

oh my goodness, I pray that you will get better soon.

[mbrooks20 in reply to LissaH]

thank you