My Diagnosis Has Changed? Again!
AnonymousDecember 18, 2008 at 6:03 pm
Guys and Gals
So I Guess you never really do get a firm diagnosis. Mine has evolved.
When I got the Dr. Report Today to administer my IVIG dosage to my local Neuro. The Letter stated that based on my worsening from Prednisone, He now suspects I have MMN. I don’t get it. I knew something was wrong.
I suspected MMN myself but I thought It came without the severe sensory issues I have, so CIDP appeared to fit. Now he changed it. He had the door opened on his last report so Yeah well so Be It. The Treatment is the same.
Anyway I am getting set up with A load dose of 35gm/day for 5 days
Then getting 4 weeks later 87gm/day for 2 days and again 4 weeks later.
And that all pending on how I do week 1. they told me I would get the liquid
and be premedicated. Still not sure about Inpatient or Outpatient yet I must
call the lower level Neuro and talk to her about it.
Then I go back for reevaluation. Good Grief. Whats Next!
I am feeling better now that I dropped to 40mg Pred already. That stuff was
putting a hurtin on me. Can’t wait to hit 30mg and see.
AnonymousDecember 18, 2008 at 8:59 pm
I am still poking around about the difference. It has to do with different antibodies. but from what I figured out so far.
MMN has low success with Steroids and some 20% have a severe decline in strength(Me). It is supposed to be without the sensory problems but a low percentage have low to mod sensory involvement(me). Also It has a very high like 80% response to IVIG so it is the front line treatment(we’ll see)
Also the Inteferon works in like 2 of 5 don’t quote me on that and also the usual immunosupressants work too. So its very treatable and a slow progressive type version. Progression comes with axonal loss but there is proven reinnervation and improvements in conductions block. So I am Good with it so far. My spelling is suckier than usual tonight cause I turned to the Coors Brewing Company for some advise on this and I am having numerous beers. All the Best to you all.
AnonymousDecember 18, 2008 at 10:54 pm
My hat is off to you for your ability to be so eloquent even with the input of Coors.:p:p How frustrating it must be for all that you have been going through. It sounds like you and the docs have a good handle on where you stand with all of this. I remember researching and discussing the variants of CIDP with my neuro and basically got the impression that it is not as important to them to pin down the specific type of CIDP in that the bottom line is treatment is going to be what works for each individual so they don’t concern themselves with the specifics. I found that to be a bit dismissive but eventually have learned to let go and just trust what I know to be true and to just be grateful to have found a treatment option that works. I really hope you find your truth and resolve so that you can continue to focus on living well.
All my best,
AnonymousDecember 20, 2008 at 5:44 am
Thanks for the advise, I could use to embody a good vibe right about now.
I have been selfish, pushy, irrational and pretty much nuts lately. I need to chill out. the diag change to MMN from CIDP, just through me for a Loop. Although very similar, the change alone clobbered me. I have been trying since summer of 05 to figure out what is wrong and it has peaked this week.
I am hoping 2009 is better and after my first IVIG, I stabilize and learn to be more accepting of everything and go with the flow, no matter what happens.
Its just one of those, I am so close, don’t throw in the towel things.
To me this whole thing is like making a tight flight connection at the airport. It gets you wound up trying to make the connection or do you become more lax and say there is nothing I can do and miss your flight. Sorry for the analogy, this is how my brain works. thanks, tim
AnonymousDecember 20, 2008 at 6:01 am
I’m with you Tim, I get your analogy and in the beginning I went back and forth between rushing for the gate and stopping for a beer along the way… I think it’s healthy to have a balance and even healthier to have a good understanding of what you can and can’t control.
As for the diagnosis, my neurologist said something similar to me over a year ago – basically doesn’t matter which variant you have as long as they find something that works to make you better. At that point I stopped for a beer on the way to the next gate… what difference does it make to me which variant of CIDP I have, it’s not like I could tell a normal person in a conversation that I have this variant or that variant and they would have clue what I’m talking about, heck even many neurologists wouldn’t know… so who cares? And I haven’t even thought about it since then. I think this is one of those things you can let go of, as long as your doctor is trying to find a treatment that works for you, which letters are tagged with your name (CIDP, MMN) really don’t matter right now.
And cut yourself some slack on your attitude dude, you have been taking steroids – you have a serious illness for which you are still seeking successful treatment – and apparently you are still running around like a nut in airports. All of that spells out a high level of stress coupled with the steroid coctail… it’s no wonder you have been feeling kinda nuts – you are not doing it on purpose Tim. Just being aware of it will help… and Coors, of course. 😉
AnonymousDecember 20, 2008 at 11:41 am
Remember, doctors practice medicine. They have been practicing for years. So far none of the have got it right yet so they all have to keep on practicing. 😀 Hang in there and keep your sense of humor and keep on trucking. There is nothing like a split S to final to start the day off right.
AnonymousDecember 20, 2008 at 8:29 pm
Well…I do not agree with what you say. Information is power.
If we know what variant of CIDP, we will be able to get better treatments.
We won´t suffer from terrible side effects from drugs that are not the best or for the variant we have.
Besides if we have periodically antibodies test (I do them every 6 months) one is able to
know where is tome for another doses of the drug that works, and we avoid the “experiments” the doc do with us. Well this is what I think.
Tim can you put your antibodies test values? I will appreciate as there is few info int he web about this.
AnonymousDecember 21, 2008 at 4:01 am
Pj, I didn’t mean to imply that ignorance was the way to go, just that sometimes when surrounded by stressful issues you look for things you can let go of temporarily until the rest gets under control. Yes, I completely agree that knowing your variant can make a difference, but stressing about it can make you worse. I expect at some point we will know my variant but if we don’t and I still get better then I will be happy all the same.
AnonymousDecember 21, 2008 at 6:01 am
I would imagine many people have receieved treatment of some sort and because it worked for them or they have responded well, that no further looking into has occured. Some may care to dig further some may not.
If they gave me the IVIG right off like they should have, I may have responded well and then things would have stayed the same. I am sure that
also IVIG has been given that coincides with natural remissions and it may appear that it has helped, thus mislead the Dr. and patient that the drug has worked. With that said we want to find what works for us, take as little as possible I would imagine, and try to lead a Healthy and Happy of Life as possible.
My biggest issue is with mentally copeing with this and finally being more accepting of it, and then it all changes. My personality type is of a planning type that avoids obstacles. A Control freak so to say. I am alway early to everything. you get my point. I need to be able to Wing it Now and Then, its good for ya. I need to Let go, particulary with this Disease, but walk the line of staying on top of your health and being a bit pushy for what we need and expect, yet accept the negative aspects. Its Tough, really tough.
I havn’t had my Antibody values tested that I know of. Is that common for you folks to do regularly. I will inquire about it though.
AnonymousDecember 21, 2008 at 6:01 am
OK, we all are different, we are humans. About me I ´m happy to know that my CIDP is idiopathic. I was nervous when I knew that some high % CIDP variants are paraneoplastic (hidden cancer) or multiple myeloma (bone cancer) first symptoms for years, that really is stressing., I think.
Is good to talk about this, maybe one get paranoiac. I have been talking about this with my psychologist, he says is god to research an get more info about the disease, but if I take profit of it, not if will stress more as you said Julie. All depends of the person.
By the way, today I slept (I even dreamed, so got at REM state ) from 01:00 to 8:00 eszopiclona pill. The psycho said is a new pill that make you sleep just 4-5 hours and there is not sleepiness after.
But I awoke rigid like a dog and back pain.
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