Beth struggles continue

Hello Beth. Am sorry to hear of your struggles. Hope today is a little better. This is a wonderful family to be in, and will be praying for you. Take good care of yourself. Emma

Beth, You are in My Thoughts and Prayers Hun! Take Care!

Beth,
So sorry to hear of your troubles, prayers and good thoughts are sent your way.
Dawn Kevies mom

I am really sorry to hear what’s going on with you. Hopefully the Pheresis will help you though so think good positive thoughts!!! Gabrielle

Lots of Prayers and Support going your Way! Keep on hanging in there! Hopefully the PP will give you some relief soon! In the meantime please know there are lots of us praying and sending positive vibes your way! 😀

marjie

That is such a blow to the backside and all over.
At least you will get a port put in. From all I’ve read and heard, that is a pretty sane way to go. From my own perspective, I’d really appreciate it as I HATE NEEDLES? and can’t watch, just ‘feel’ during the ‘process’. After four years it’s harder to find good sites and I do believe my infusion nurse takes it as a matter of pride to ‘get’ me on the first try. SIGH.
I can understand about the ‘eye’ things…I was tested out the wazoo by a neuro-opth for my problems, which ‘whew!’ abated, but sometimes come back and they are scary as beyond HECK! Got a sort of diagnosis of ‘non-aura’ migraines for the vision issues, but as I said they’ve pretty much gone and I am not complaining about it all for sure. That testing did rule out anything extra about cardiac, vascular and a whole slew of other things….I too did go thru that 3+ hour eye exam and then another for a ‘second opinion’ from another expert.
As for the cardiac stuff? Too many docs isolate that aspect from the other issues: one can affect the other and vice versa. Prod them gently w/’stupid questions’ about this…this way you don’t let them know that you are on to them and MISSING stuff. It can be related and it can be key and very important.
Sure hope this helps and keep us up to date please… Shouldn’t have to go thru this stuff this way! EVER.

Beth, I am so sorry to hear of you struggling. It seems you were doing so well. I am hoping and praying there are sunnier days ahead for you. Take care and keep us posted as best you can. We will all think of you and send you positive energy:)

I am so sorry to hear of your struggles! Something that has been helping me tremendously to remember as I go through my own struggles is “It’s always darkest before the dawn.” I pray that the “dawn” will be coming soon for you!

[FONT=Georgia][SIZE=3]Beth sorry to hear about your continuing struggle, I hope things soon get on a better track. Wishing you nothing but the best ![/SIZE][/FONT]

Beth, I am keeping you in my prayer thoughts. Many hugs!

Hi Beth, sorry you have to struggle so. Is your doctor aware of the difficulties treating CIDP associated with anti-MAG IgM? From what I’ve been reading in a number of references, PP, IVIG and steroids tend to be not very effective. I think I’m a good case in point. Did you discuss at all the possibility of trying Rituxan? There is a possibility that this might help — but on the other hand, it also can backfire (see my recent increase in anti-MAG IgM).

My neurologist I saw three days ago told me it was very depressing to see a patient like me. She said after Rituxan nothing is left except chemo which was not an option because of my age.

I am worried that your doctor might be over medicating you, three drugs for your heart condition sounds like a lot. Could it be that those are really giving you the most trouble? As I mentioned to you before, I also have atrial flutter but without any medication. That’s been going on for over a year and I’m still alive. The only medication I am taking is Micardis and a low-dose diuretic to keep my blood pressure down. But then again, I don’t really know your situation and am just trying to share what I’m doing.

Take care

Hi Beth:

Here’s hoping that your situation improves in the near future.. I’m sorry to hear about your struggles… Take care of yourself……..deanop