[Blessings2You]

Anybody heard from Erika lately? Hope she's okay!

[Blessings2You]

Just bumping this up...Erika, are you out there somewhere?

[Erika]

Hello Everyone,

Well, it has been and continues to be a wild ride. I thought that once an assessment of secondary progressive MS was made, that there would be no more exacerbations; but I was apparently wrong…or the assessment was. I suppose that it doesn’t matter. My Neuro has pretty much signed off on my case now because I’ve refused to do any more new drug therapies and trials are also off the table for me. He had me discontinue LDN for a bit; with poor results...but I’m back on that and also take Baclofen when I just can’t handle the no sleep, spasm cycle.

For a while there I sort of threw in the towel and withdrew to home and solitude. It became just too much of an undertaking to do much of anything; including visiting here. It seemed that everything was either shutting down or going into business for itself. In a nut shell the body became very spastic on the outside and flaccid on the inside. That led to a series of tests, diagnostic guesses, surgery, as well as tried and failed medications until I just said “Enough already, I’m quitting all this testing-treatment stuff!”

I’ve honestly lost track of everything this body has been through in the last couple of months…memory and cognition became total strangers.
I’ve had some explorative surgery on the stomach and bowels which ended in an assessment of autonomic neuropathy. There’s no treatment for that, so now it seems that I’m stuck with a slow gastric emptying time and pretty much a blender diet to help things through. A slowing of the heart rate and more thyroid slowing are also a part of that too. Talk about feeling sluggish.

Since going through all of the diagnostic stuff and then pulling the plug on it, mostly I’m managing OK and am dealing with ongoing visual, balance problems along with muscular spasm and pain. A couple of new arrivals are bladder urgency and trembling if I haven’t eaten enough.

HOT TIP: For those of you with bladder urgency issues, mine is always worse on an empty stomach/low blood sugar. Although everyone is different, for me, even a small snack can prevent it from happening.

Its good to be back with you. I’ve missed being here but I was really at a loss for what to say without being a drag. I am feeling somewhat more in control this week and hope to visit more often to catch up on everyone’s goings on.

Hope that everyone is dealing OK with summer’s heat and this stupid disease.

With love, Erika

[Kitty]

I'm glad to see you back, Erika, but not happy you've been through so much health-wise. I've been going through some challenges of my own and know all too well the feeling of "whatever" when it comes to this disease. Seems we manage to get through one hurdle and along comes another. No recoop time in between. I hope things get better....or easier.....or whatever they're supposed to get for those of us who are just fed up with the whole deal.

[Erika]

"I hope things get better....or easier.....or whatever they're supposed to get for those of us who are just fed up with the whole deal."

Thanks Kitty.
So well said. Sorry to learn that you too are having more problems.

It is so hard to keep the spirits up isn't it?
I did have to chuckle when a well meaning friend said that I should do things to de-stress and suggested a hot bath followed by reading a good book. Yuh, the hot bath would certainly make reading with double vision a de-stress exercise (sarcasm off) .

With love, Erika

[ewizabeth]

I'm sorry for what you've been going through Erika. I hope it eases up for you soon. My bad symptoms are mostly memories now except for the fatigue and some pain. I hope you'll have a long remission and get a break.

[Blessings2You]

So glad to see you here again, and sorry things are looking so bleak right now. As I told a friend the other day, "Some days I not only don't have the energy to care, I don't have the energy to care that I don't care."

[Kitty]

Originally Posted by Blessings2You

"Some days I not only don't have the energy to care, I don't have the energy to care that I don't care."

B2Y this is going to have to be the new MS slogan! It should be on a t-shirt!

[jprinz99]

to inject some loving humor:

"...but you look so good!"


: grouphug:

sorry life is rough lately - I honestly hope you feel better and SOON! Just remember when the going gets tough- we can all help you complain about it

[SallyC]

Erika!!!!! I've missed you and your great posts. So sorry for
the **** that you have been going thru. This disease sucks
big rocks. I hate that you are suffering.

Stay with us, feel better, we love you.