Help Needed, Lots of Opinions Please!!!

[rosepetals]

Help Please !!! I am comming out of my flair that started last May 2009. I am dancing with Joy.

My question is how do you know how much you can do without overdoing it? Everyone says listen to your body.
How can I listen better and how will I know?

Acthar is the reason I am finally comming out of the Flair. Five days of injections done at home. It retails for $ 30,000 and lucky for me my copayment was $45.oo. It worked so well. The steroids I took in Feb. only made me worse. I completed the last shot yesterday.

It had less side effects than the steroids which felt like they darn near killed me. I became paralyzed on them and slept
twenty hours a day. The angels visited me in Feb. Making me think I was passing.

I can finally walk without a cane, my balance is improving, my enegry is better even though it is not great. My walking is improving. I don't walk like a penquin anymore. My mind is clearing up. I feel like a new person.

I feel weak and wobbly yet stronger than before. I know that is conflicting. I don't have any other way to explain it. It feels like my legs need to build up strength along with my arms. It still is a stuggle to get off of the floor. I finally have lots of hope.

Please tell me what I need to know. I don't want to overdo it but how can you tell if you are?

[Justsayyes]

Great news that Athcar is working to overcome your flare!

My advice is to not act on sudden urges to do what you normally would not do. Spend a few days taking it relatively easy, and add a new activity every day. If you feel up to walking, go ahead, just don't go too far knowing you have to turn around and come back!

I tend to really overdo when I do steroids, and the result is a clean house and an exhausted me. Don't think I really did any permanent damage.

[Lucia]

rosepetals -That's a beautiful user name. Love the way it sounds plus the image it prompts.

I'm glad you're feeling a whole lot better but I'm going to echo what Justsayyes advises. Take it slow and easy.

Do note what may trigger a flare for you.

For example, I had a temp. job in which I was in front of a computer screen all day looking at the company's website, while I accepted orders over the phone for them.

The company set the resolution so I couldn't enlarge it. After 5 1/2 days of looking at tiny print besides the stress of arranging for rides and dealing with calls, it triggered a mild TN attack. I quit the job. It wasn't worth aggravating this symptom further.

This told me that if I couldn't adapt the computer screen to a large print, I would get eye strain and, more than likely, trigger a TN attack.

I tested this theory out in a part-time job that I accepted and learned to get to on my trike.

First thing I did in the job was set the resolution to my comfort level.

Now I'm lucky I'm working for a company that actually cares about its employees.

They actually had their ITT person help me with the computer besides setting up my workstation so working and viewing was comfy.

As a result, I have not had any TN attacks.

P.S. Yes, in the end I listened to my body but I listened to my body after it gave me a bit of a wake up call.

The point here is to listen to that small bell in your body telling you enough is enough before it starts calling you with a fog horn.

[Shashi]

I used to be a moderator on a hysterectomy support web site, and my advice to the ladies having surgery and wanting to know how much they could do during recovery was to only do half of what you think you can do.

Seems like pretty good advice in other situations (like this one) too. So, whatever you feel up to doing, do about half of that. Then you won't have to worry too much about overdoing it too soon. For instance, if you feel up to vacuuming the carpet, just run a sweeper over it instead. If you feel up to shopping in several different stores, just do one.

I'm glad you're feeling better. I know what a relief it must be.

Big hugs,

Lisa

[MomtoMiracle]

Rosepetals - how are you feeling now?

Hi Rosepetals,

Thank you for your post. It gave me hope!! I'm starting the Athcar tomorrow. Prednisone hasn't gotten anything under control. I did the Solu-Medrol this past winter and the side effects were awful... and now I'm flaring badly again.

How are you feeling at this point?

Sincerely hope all is well with you.
: )

[rosepetals]

Momtomiracle

Well, I think I am going back into a flair. I have had symptoms for three days of increased weakness, worsening foot drop increasing, balance worsening, increased muscle stiffness which starts in my feet when I stand runs up my back and down my arms to the elbow. Down the arms to the elbows is new symptom.

Neck pain where the lesions are, increased back spasms and in the back of my thigh. Thigh spasm is new. Cog fog increasing, fingers are having difficulty typing. ETC, I can't remember everything.

Oh, my left leg has increased numbness and some on the right.

Went to GP today will go get labs done tomorrow to check for UTI and other stuff.

If It doesn't clear up or gets worse I will go see the neuro and try to get 10 days of ACTHAR.

How are you doing on it?

[MomtoMiracle]

haven't started it yet...

Hi Rosepetal,

I'm sorry that you're feeling badly again! I'm waiting for the Athcar to arrive to start it. How did the labs go? Any "luck" of a UTI? (I always hope for that b/c it's an easier fix than an MS flare. LOL).

How were your side effects on the Athcar? They're going to try me on five days sub q.

[rosepetals]

Hi Rosepetal,

I'm sorry that you're feeling badly again! I'm waiting for the Athcar to arrive to start it. How did the labs go? Any "luck" of a UTI? (I always hope for that b/c it's an easier fix than an MS flare. LOL).

How were your side effects on the Athcar? They're going to try me on five days sub q.

Still awaiting labs. Having lots of fatigue and difficulty walking distance.

The side effects of acthar were very mild. One night of insomnia, slight anxiety due to rx one day, no weight gain, no edema. Mostly it made me feel quite a bit better the same day I started it. It is much easier on the system compared to typical steroids.

[MomtoMiracle]

update?

Hi Rosepetals,

How are you feeling?

I think the Athcar really helped - with less side effects than the IV Solu Medrol. I had a Prednisone taper before it so I still had the side effects from that, but nothing like when I did the IVSM. I'm still experiencing exhaustion and some neuro. symptoms, but nothing like before. The heat index is 100 here, though, so I have to think part of it is like that.

Anyway, just wanted to touch base and let anyone lurkers know about the Athcar. ; ) Hope you're well.