Tingle
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December 11, 2013 at 5:59 pm
OK. I was just addressing the part where you said “Gait problems are due to damaged nerves. No treatment for CIDP repairs damaged nerves,” as that implies that CIDP treatment will not address gait problems. I see what you’re saying now, but that opening statement threw me.
December 10, 2013 at 3:08 amHello. I was diagnosed in May 2013 and started treatment a few weeks later. Overall my symptoms are fairly mild (at least compared to some of the folks I see in here). One of my concerns was gait; I found it was particularly noticeable when going up or down stairs, where I found I had to make sure my hand was on or near the railing so I wouldn’t take a tumble. I’m 53 and gait had never been a problem for me until last year.
I don’t completely agree with GH when he/she says “Gait problems are due to damaged nerves. No treatment for CIDP repairs damaged nerves.” The demylenation of the nerves is reversible, so it depends on if the gait problem is caused by demylenation, or by a more permanent kind of damage.
In my case, my legs were getting weak, particularly the right one. Since I’ve been on IVIG they have strengthened noticeably. The “drop foot” is mostly gone, most of the time, and the muscles around the knees seem stronger. Those were the things that were giving me gait problems.
But if I’ve learned anything in the past 8 months it’s that you cannot make any absolute claims with CIDP. It affects everyone differently. This is the way it affects me (and the way the treatments affect me). That doesn’t mean it will affect others the same way.
October 9, 2013 at 2:16 pmbyn806, I reported the rash to my neurologist and she changed my IVIG from Privigen to Gamunex. The itch and rash went away after about a week. I still get some itching on my legs, but I was getting that before I started IVIG. For large areas of itchiness I find Gold Bond medicated cream helps. For specific hives, over-the-counter cortisone cream really helps.
Otherwise, I’m happy to report that things have been going well. I occasionally fall into a funk where I have a lot of aches and “fog” for couple of weeks, but then I come out of it and go the other way, where I feel great for weeks at a time. Currently in a “great” phase. 🙂
In terms of CIDP symptoms, I think the damage to my feet is permanent, but when I’m at the high- or even mid-point of my roller-coaster ride of symptoms it’s hardly noticeable. Fingers are still a bit numb, but it’s tolerable. The best improvement seems to be my gait (walking). I no longer feel like a tottery 90-year old when I walk; for the most part it’s completely normal.
I realize that I’ll most likely never go back to “normal” so it’s a matter of creating a new normal. If I could lock down how I’ve been for the past month and declare that to be “normal” and permanent, then I’d be happy.
August 13, 2013 at 2:51 pmHi SSS. It’s been up and down. The initial success seems to have abated somewhat. The IVIG sometimes gives me headaches, and I find that overall the effectiveness seems to have diminished somewhat. I’m also getting some minor skin rashes and a lot of itching. I’m hoping things swing the other way soon. :-/
May 28, 2013 at 12:08 amBTW, something unusual today, so I though I’d report it here for anyone who’s following along. It’s this: today I feel completely normal. As in, “normal” normal. As if I had never had an IVIG treatment; no headache, no stiff neck, no cranial tension, no dizziness, no feeling “spaced out;” all of which I’ve had by varying degrees since my first infusions two weeks ago. All gone, as of today.
Furthermore, my CIPD symptoms are barely there; the fingertips feel 90% normal, virtually no muscle cramps, and the famous numb feet are only a little bit numb.
All this the day before my next infusion — I get juiced again tomorrow, possibly repeating the cycle of cycles over again. But it’s nice to know that “normal” is one of the possibilities in the daily grab bag of “how will I feel today?”
May 26, 2013 at 3:43 pmThanks. It comes and goes; every day is different and it’s hard to predict. By the end of the day Friday I felt better than I had since all this started (at least in terms of the headache). But last night I had one glass of wine and that brought on a “hangover” as if I’d drunk two bottles, so I feel awful today.
I had some wine last weekend too, before the 48+ hour nastiness, so I think there’s a connection, although I’ve never had a problem with a few glasses of wine before. I suppose of pregnant women gan go nine months without a drink I shouldn’t complain about spending the next six months dry. :-/
In terms of sleeping, I’ve been taking Tylenol PM (over-the-counter) and it helps a bit. I don’t sleep the night through though. Strangely, I’m not sleepy during the day either, unless I have one of these crushing headaches, and even then it’s not so much a desire to sleep as a desire to escape.
May 24, 2013 at 3:18 pmbny806, that’s a wild mix of bad and good news! On the bad side, the idea of getting aseptic meningitis again really bums me out. What misery! On the other hand, it’s good to see you’re doing better and seem to have found a way to keep the AM at bay. I’m hoping I can adapt the way you did.
In my case they’re running it in at 150. The nurses check on me frequently, and always say that if I get a headache they’ll slow it down. When I go in on Tuesday I’ll ask them not to go above 100, and we’ll see if that makes a difference.
It’s been a strange week. I still feel like my head is wrapped in a tight invisible helmet, although it doesn’t keep me from functioning. (I need to work.) I always feel like I’m on a cough-syrup buzz, even though I’m not taking anything stronger than Advil and Tylenol.
Last night I had a small crash at the end of the day. Zero energy and barely and appetite at dinner. Felt really bummed out and dizzy. After my tiny dinner I took a multivitamin and a vitamin D pill. An hour later I was peeing like a race horse (three times within an hour). After than I felt a lot better. Fell asleep without any sleep aids, but woke up in the middle of the night energized, in a great mood, and hungry! Whaaaat?
Today is about the same as it’s been all week. Bit dizzy. Bit of a clamp on the head. Not as bad as yesterday though…
May 22, 2013 at 1:40 amThanks GH. I should point out that the only self-diagnosis I did was declaring my excruciating neck/headache (48 hours +) to likely be aseptic meningitis. There was no fever, and after it peaked (about 18 hours in) in started getting better. Had I gotten a fever or deteriorated I would have gone to the ER for sure. Anyway, “self-diagnosis” is probably an overstatement, as its only purpose is to put a label on it. I’ll definitely tell them about when I go in for my next infusion.
I’ve heard other say the initial loading dose is five days too. Others have said three. In my case the symptoms are not that bad, plus there’s the steroid dose, so maybe that’s the standard here for someone in my situation.
Glad to hear you’re in remission! I don’t now if PE is an option for me. This is all very new to me, but you can be sure I’ll be asking more questions next time I’m at the clinic!
