My neurologist says I’m in a gray area

Thank you all so much for responding. I checked out SIDP and while it’s in between the two it still doesn’t fit my time frame. It took nearly 6 months from the beginning of the foot drop until I was hospitalized with breathing problems which fits more with CIDP, however, I’M BETTER! I have continued to get better with flashbacks (or Return of the Dead as I call it) every few weeks but I am not getting worse which I think is characteristic of CIDP. I do occasionally get new symptoms, or symptoms that went away a long time ago flare up and revisit for awhile. That is depressing, but aside from the constant fatigue and autonomic issues there is nothing that I can say is really worse, either better or the same. So unless I have such a mild case of CIDP that the IVIg can last for a year then I feel like I’m right back in the gray area.

For the most part it doesn’t matter to me which one it is, I have been bounced around so many departments from Rheumatology to Infectious Diseases that I’m glad we’ve finally settled on where the problem is. I’ve been lucky in that the only person who thought it was all in my head was… ME! And I think that was just a big dose of denial. As my husband told me “You are Cleopatra, Queen of DeNile!” It’s our code word for when I try to do something he knows I can’t do … “hey Cleo, why don’t you use the gate instead of climbing over the fence…” hee hee, he’s so wonderful!

Well I hope you all have a happy Friday. I finally slept past 2am this morning so I’m taking that as a sign it’s going to be a good day. Oh and my face isn’t numb this morning. Whooppee!

Hey I also just wanted to apologize to anyone offended by my gallows humor, that tends to be the way I deal with stress and while it usually keeps my husband and I from going insane with worry, it can also be offensive if you don’t find anything funny in having a medical problem.

So – there was Dawn of the Dead, the acute hospitalization phase
and now there is Return of the Dead, when I get flare ups. Did anybody see those movies in the 1970’s? They scared me to death as a child but now I think it’s funny (and kind of appropriate.)

And of course there is me Cleo – queen of DeNile.;-)

Well Deb that makes me feel a whole lot better that you get almost back to your normal. (what is that anyway… [I]normal[/I]?) I had to laugh about decorating your crutch – while I was in the hospital my husband and some of his friends decorated my room, my walker, my IV pole – whatever they could find with little stickers. On my walker were the monkey stickers – so I started calling them my monkey bars. It was really hilarious. Once I could get to the bathroom on my own I was finding them in VERY unlikely places and it made me laugh constantly. How silly! But I felt sorry for the cleaning staff, we tried to remember where they all were but…

Pattie I saw that T-shirt and if I didn’t have more T-shirts than Walmart I would have bought it for the exact same reason. I’m thinking of making one with “Tripping” on it – just that – and let people wonder if it’s drugs or disability. (I’m so awful!)

Ya’ll have a good day. So far this one has been interesting. I woke up to four mice trapped in the trash can because my husband forgot to put the liner in – THAT will get your adrenaline going in the morning! To top that off my next door neighbor let out a hair raising yell this morning and when I stumbled outside I saw that someone had completely wrapped his car in cellophane and stuck little flags in it. I almost peed in my pants it was so funny.

Julie

What a brilliant idea Deb! (pun intended) your lights are beautiful and beat the heck out of my dime store variety cane. I think it’s time for me to upgrade though I don’t need the cane unless I have to walk a lot.

Well I have plenty of gray area on my head that I attempt to cover with hair dye but most of my gray area is still between my ears. 😉

OMG Shawn of the Dead – that’s hilarious! No I can say for certain that I never saw that.

Dawn, I had two courses of IVIg in the hospital back to back for a total of 9 bags and $45000 (that god for insurance). I was going to have another round six weeks later but the fever put my doctor off and we went on an 8 month diversion trying to figure out what the fever was from. Everyone assumed I caught something in the hospital or that in my suppressed state I got another illness. NOW it makes total sense that it was part of the autonomic issues and I wish we’d gone ahead with the IVIg. Nevertheless I did get better on my own without a second/third round of IVIg.

Now almost a year after Dawn of the Dead I am mostly stable but about every six weeks or so I have Return of the Dead and something gets numb or weak or droopy or I am unable to get out of Quicksand my lounge chair because I’m too tired or weak. Then just as quickly I will get better, sometimes in the same day the numbness in my face will go back to basically nothing.

I can’t quite put my finger on what makes me get better quickly but my husband thinks it’s entirely due to how much I rest. If I do housework in that state I don’t seem to get better quickly but if I just sit around then it takes less time to recover.

Here’s the irritating thing – both my doctor and my sister-in-law who is a doctor keep telling me to not hold back, to get on with my life and I feel like a total wimp when I say “but I’m so tired and when I do things I get worse.” I wonder if they think anxiety and depression are keeping me pinned to the chair but when I do things I get all shakey and weak and sometimes fall down. So what do you do? I mean I go until my legs turn to jello then I have to sit down for a few hours but the amount of time it takes for my legs to turn to jello hasn’t significantly increased since early March. I guess it takes about 100 feet or 15 minutes of standing, sometimes more or less but that’s about it. So they believe that doing more will increase my stamina – I believe in the logic of that since I used to work out regularly, however it really hasn’t worked for me in practice. The more I do the more run down I get and the more symptoms come back to haunt me and then I pay for them. Just one day of overdoing it can stick me in the chair, or bed, for a week or more. I’ve had that conversation with myself many times – you know the one that goes “ok, get off your lazy butt, if you don’t work to get better you will just make it worse” and I’ll increase the amount I walk daily, or throw a few situps and some weights in there and then BAM, I’m back in the chair wobbling to and from the toilet frantically. Sigh, it just doesn’t pay off but maybe the Provigil will help get me over that hump so that I can work to get my own stamina back.

Anyway, it’s a beautiful day so I’m going to put on my Willy Wonka shades that cover most of my face and go watch the dogs play. 🙂

Well it was a rough weekend but I think I’m coming out of it now, slowly, slowly, like you Caryn, it does seem tied to the monthly cycle – like we needed that little added bonus monthly. I also think when my allergies are acting up it makes things worse too – which totally makes sense as they are both autoimmune diseases. We finally got some rain after months of drought so that should help the sneeze factor.

My doctor did offer IVIg and it did help – remembering back to last year I regained feeling in my foot after more than a year of not feeling it, that was amazing! I decided to hold off on it until after the lumbar puncture and new EMG because I don’t want to take a chance on messing up the results so sometime in September maybe. Although I could easily argue with myself that I don’t really need it because I get better on my own anyway and there are lots of people out there worse than me… IVIG shortage… etc etc etc. so we’ll cross that road after the chicken goes first.

I think MOST people don’t understand this illness – I mean you have to admit it’s a little strange and I’m coming to expect that bewildered look when I explain what happened/is happening to me. And I think it was easy for me to write off some of my symptoms until I came back here and read that they are more common than I thought. I know it’s hard to understand the fatigue – I don’t know if I would understand the immense weight pressing me into the chair if I didn’t feel it myself. My husband can see it so he totally understands but I think if you are healthy and have never had a major illness it’s hard to understand that forcing myself to do more doesn’t help. I’m not lazy, I’m tired and weak.

Part of the reason I doubted my sanity and the potential diagnosis of CIDP is because although I do have slumps I still get better on my own and I have never gotten as bad as last year when I was totally paralyzed except for my left leg. Right now they look kind of the same to me – either it was GBS and I’ve got residuals or it’s CIDP and I’ve got relapses – it feels the same to me… Return of the Dead. 😉 I’m not clear on whether the facial involvement definately means Miller-Fisher or if you can have a droopy face and weak neck with CIDP but it’s reassuring that other people have had fevers. I think that has been the thing baffling us from the beginning and for some reason most doctors blew me off when I asked if it could be due to the inflammation – except this dude at Hopkins, I like him and he listens to me. Actually he interrupted every sentance but I am used to that from my husband’s family so I felt very comfortable with him – I think it shows he can multi-task thinking, you know listening to me while exploring other possibilities and ruling them out before I manage to finish a sentance. It’s efficient but I know most people think it’s rude.

So… I’m compiling a list of advantages to my symptoms… here is my start:

I always know the opposite color of something I look at because of the burn out. You know how you can stare at something for awhile then look at a white page and you’ll see the opposite color of what you stared at? Well that happens to me all the time and it’s actually quite handy when I attempt to do something artistic.

My sense of taste is way off therefore I’m no longer picky about what I eat, this is nice because I’ve never been a great cook. Too bad my husband’s sense of taste is excellent.

Because I am home all the time now my dogs are much better behaved. They are smart enough to figure out the bad days and are much more careful not to knock me over when I’m wobbly. They’ve done it once or twice and they freak out when I fall down so now they kind of work as a team to keep each other from bumping me. (on a side note – I’ve been offered a lot of dogs lately in desparate situations – what’s up with that? Are people who are home a lot natural targets for dogs headed to the shelter? Well we’d take them all if we could afford it but do you have any idea how expensive vet bills are?) (and do you know anyone that might want two yellow labs, the new baby in their house developed allergies?)

And one last positive spin – I never have to stir my coffee anymore, just pick up the mug and by the time it gets to my mouth it’s been shaken and stirred.

Whew! Maybe we should start a new thread on positive spins, it’s really hard to think of them sometimes but me and the hubby try to work on it and can get really bizarre in our quest for something positive. But I need it because I can get really depressed and feeling sorry for myself so it helps to have this list of silly positives to turn to when I’m really bummed.

Have a great day ya’ll –

Julie

That’s a good one Mackk!

Here’s a new one: Now that my vision is blurry on and off I don’t see most of the dog hair and dust that is sitting there waiting for me to clean. Of course I freak out when it starts moving and I realize it was one of the dogs instead of just a pile of fur on the floor.

😉

Herself, I haven’t even thought about weeding yet because my whole yard is one big weed factory but I do periodically go outside and watch the plants grow and the squirrels play.

[QUOTE=homeagain]… I surely hope not one of your dogs flomps down and deliberately trips you! I think, that they are smarter than THAT![/QUOTE]

Well I hate to disappoint you but the intelligence of my dogs varies directly with their interest in what I have in my hands to eat. At dinnertime they are the smartest dogs I’ve had, they plop their little rear ends down and sit (impatiently) until I bring their bowls. Any other time they do pretty much what they want but they have their own room with indoor/outdoor access so my house stays (mostly) cleanish. They don’t trip me on purpose and I’ve got much better balance now than I did even six months ago so I don’t go down often anymore. They just get – excited – happy – you know dogs. If they haven’t seen you in five minutes it’s been forever for them. But I love them and at times I swear they’ve kept me sane. One of the two brothers, Emmitt, had to have both his hips replaced at 3 months and I know they bother him to this day but I swear you’d never know it other than an occoasional whimper when he lands wrong from jumping around like a kangaroo. He is the happiest dog I’ve ever seen and I’ve had lots of dogs in my 42 years. I know he can’t have any clue that if he had ended up another family he wouldn’t have had that surgery and would most likely be dead but it sure seems that way. His brother Harley is just as laid back as they come aside from his fear of thunder and our third dog Blackbury came to us all the way from the streets of Tiawan. All our dogs are rescues and if you’ve ever gotten a dog from a shelter or the street you KNOW they are grateful to be with you. It’s plainly obvious. SOOOOOOO anytime I get depressed I go downstairs and hang with the dogs in their room for some puppy therapy. Heck if Emmitt can bounce around with two metal hips I can get my lazy old self up and go throw a toy for him. It’s good PT for both of us. 😉

As for the PT, I’ve got mixed feelings about that… I do PT here at home, I’ve got a little routine down from many years of PT … but I also know there are some things you can’t do on your own. I live outside a small village, outside a small town but if there is one thing that small town has is PT places – I think I counted 4 at one point. I’ve been going to the same person for years now (after each surgery, dislocation etc.) and she EXACTLY fits my definition of a good physical therapist and sometimes I just hate her for it. (you know what I mean) but she is incredibly smart and was the first person to recognize the foot drop and suspect GB so I have her to thank for the early warning. It took another 6 months for it to get bad enough to put me in the hospital but she was the first to suspect GB and she was the first person to actually get my right leg to move on it’s own after the paralysis spread. I was getting sessions of that electrical shocky thing where they stick the electrodes on your muscles and it periodically shocks you and contracts the muscle. (therein lie my mixed feelings) At the time I had no feeling in my right lower leg and it hadn’t moved voluntarily for a month or more. That day she cranked up the juice and shocked the living crap out of my leg – honestly I still bear a scar from one connection point – BUT it must have jolted my nerves enough to give a half hearted attempt at moving again and for the next three months I could move my lower leg voluntarily. After that all bets were off as the numbness continued to spread up my leg and then hit my face/chest etc. and I ended up in the hospital etc.

And another positive outlook to leave you all with today: A thousand years ago when my husband I got married I made some half-thought out promise to keep my hair long and he made some vague promise to help me take care of it by brushing it etc. Well I kept up my part of the bargain as you can probably tell from my picture but alas the spouselet was SLACK on his promise… until this year! When I was in the hospital the nurses and my mother wanted to cut my hair saying it would be easier for me to take care of etc etc etc and I was adamant that they would not cut it against my wishes, and more important against my husband’s wishes. I was planning to use that threat as a crowbar to get Jim to help me more with my hair but as it turns out it wasn’t needed at all – he recognized the threat immediately and has been SO GOOD about helping me out. Trust me washing hair down to your rear end is a big chore when your arms don’t move that well. Plus he learned to braid it too which makes it infinately easier to deal with when eating. 😉