Name: Susie
Original Glazed
No, there are no Krispy Kreme donuts here. I'm referring to the appearance of your eyes in just a few minutes, if you hate reading medical crap the way I hate reading medical crap. If so, just move along, and I'll try to do better in a few days or so. If you stay, and your eyes glaze over . . . don't say I didn't warn you.
It's been about two weeks since my last new-rollogist appointment (it was the old new-rollogist; I went back to him after being so thoroughly turned off by Dr. Christmas, the one I saw on 12/22). There is no reeeeeal news. There's been a bit of a change in perspective and a possible lead in another direction.
What the neurologist said: He will no longer commit to any percentage of certainty that I don't have ALF. (He started out being 99% certain I don't.) He does continue to say that he doesn't believe I have it, though. He has done all the blood tests he knows to do. Actually, there was one he hadn't done, and I asked him for it, and he ordered it, just to humor me even though I could tell he doesn't think it will show anything. That one had to go all the way to California to be read, so it'll probably be a while before I hear anything. My symptoms continue to be consistent with a particular type of ALF that begins in the throat and tongue muscles. (I am deliberately not using medical terminology here because I am not ready to become a stop on the search terms for people researching that illness. When and if I can be of some actual help to such seekers, I will certainly do so, but I am not at that place now.) However, he says that IF I have it, I have a very slowly progressing case of it. So he asked the question again, that he asked, I think it was back in August: "Do you really want to know that you have an illness that you can't do anything about?" And I finally have an answer to that question.
He said that he can do a test called an EMG, during part of which he would put a small needle into my tongue and shock the muscles there. Their reaction would give him some information. Essentially, a "positive" on the EMG would be "confirming for ALF." However, a negative on the EMG would not rule out ALF. It is not that reliable, and it may simply mean there has not yet been enough muscle degeneration. So, in short, if I have the test, which he said will be very painful, I may learn that I have a nightmarish (paralysis, loss of speech and swallowing, eventual respiratory failure) terminal illness. Or, I may learn nothing at all. Just endure a painful test and still be left wondering. And, as he said, if I have it, I have a slowly progressing case of it. It is an illness that would become quite undeniable at some point, test or no test. I cannot imagine that knowing I have "it" could do anything but make me feel worse, less able to function than I do, than I am, right now. There is no point in seeking evidence, just to have a label to replace "WTF Disease." Remember, there is no treatment for ALF. So, no point. That's my (and Jif's) decision, at least for now.
POSSIBLE new direction: When I saw Dr. Christmas and he sent me for some bloodtests, I asked him if he would throw in "Vitamin D level" just as an aside, because back in the summer my internist discovered that it was very low. We regarded that news as incidental to everything else that is going on, but I did begin faithfully supplementing with the maximum recommended dosage of supplements, and I just wanted a re-check to see if I was within normal range yet. But guess what? Even after months of maximum supplementation, it's still deficient. This means something. I don't know WTF it means, but it means something. Next stop, an endocrinologist. Jif did a little online research and discovered that prolonged deficiency in Vitamin D can lead to neurological symptoms. Muscle weakness. This is just a tiny bit exciting. Because maybe it means that what looks like ALF symptoms could be the result of Vitamin D deprivation (this is what Jif and I are speculating/hoping; no medical types have said so yet). That doesn't solve the problem, because there is some reason that my body is not processing the massive amounts of D I've been feeding it for all these months. BUT, it may suggest a more manageable problem than ALF. I mean, cheez whiz, as far as I know or can imagine, any medical problem is a more manageable problem than ALF.
So. More blood drawn today. And an ultrasound of parts that an endocrinologist will be interested in -- thyroid, parathyroid. I'll keep you posted. (Oh, and for those of you who've followed this whole long, strange trip, the room-at-all-ogist did all the tests he could think of to do, and came up empty. But he was kind, and interested, and asked me to let him know WTF WTF is when I find out. Kind helps.)
There's more I want to say about all this, but I hate writing medical; so I'll do the rest another time. These are the highlights and lowlights right here, for right now.
As always, I thank you for your prayers. Maybe, maaaaybeeeeee we're getting somewhere. Maybe some answers -- hopeful answers -- are coming soon. So don't stop now. Or if you have stopped (and ohlord, I know it's been SUCH a long time), start again! Thank you and much love to you.
file under: &Partial Nudity &WTF Disease
posted by Susie | 7:40 PM
44 heads are better than one . . .
Haven't stopped praying, haven't stopped wondering and hoping, haven't stopped Googling for more clues. Glad to hear you have another direction... Vitamin D deficiency could requires a vacation to someplace sunny!
I'll bet nobody here has stopped praying!
I sure hope "D" is de problem, and that leads de doctors to de resolution.
No glaze here.
Your new rollogist's refusal to commit to Not ALF must've been discouraging. But I like that he's thinking of you as a whole person and not just a collection of symptoms. Some docs wouldn't help you think through your options the way he did--especially the mental/emotional component.
Still praying for you. Gimme a D!
let me send you some of my baby's Vitamin D drops!
I'm glad you decided not to endure the torture of the EMG just for the sake of it!
Prayers are still ongoing for you my dear! Lots of love too!
xxoo
Maybe they could pierce your tongue at the same time?
Gosh dang it, now I'm feeling Krispie Kreme deficient.
Okay, now I can say it. The first time I read of your vitamin D deficiency (you must have mentioned it in passing) it stood out for me, just based on some odd reading I've done here and there. That you are still deficient despite supplementation is definitely suspicious. I hope that the vitamin D avenue proves fruitful and there is a way to alleviate your deficiency. Spending lots of time in the tropics sounds like a plan! ;-)
barb, yep, I do need more sunshine, that's for sure :)
bucky, your comment makes me think maybe I should "put D lime in D coconut..."
shawkey, yea, gimme lotsa Ds! That neuro drives me nuts with his oblique communication sometimes, but he is right on this one; it took me a while to fully take in what he was saying. Bottom line is, if that test could rule it out, I'd go for it, just to get that over with. But since it can't . . . I don't need a label. I just need to get through every day, and continue hoping someone finds some other explanation. Thank you for STILL praying :)
little mama, well, the pills and the capsules aren't working, so maybe if I put that nasty stuff in a bottle of milk . . . I'll try anything. Thank you for your prayers. Kiss Katie for me :)
mrB, I don't WANT my tongue pierced. I already had it biopsied; that was enough tongue action for me for a while. I've heard that Krispy Kremes are the crack of the South.
karen, yea, that's the thing. I'm taking even more than the "RDA" and I'm still deficient. So something's not right. Whether that something will explain WTF, I don't know. But I hope someone knows.
Good Heavens, surely your medical bills don't need another test! especially one which is not a promise one way or the other.
Sorry, I'm being pissy this week since several routine blood tests and one exam claimed $100 from my checkbook, even with adequate health insurance.
Always have you on the Prayer List. Plus I just finished another shawl, going to a very needy lady.
You'll get to the bottom of this. Even if California falls over into the ocean, surely there are other testing centers.
~~love and Huggs, Diane
definitely no glaze here honey... still sending all positive energy available to you my friend...i, for one, am grateful for the update.
Hi, Susie! I think you're onto something with the vitamin D thing. I really do. Please know that my heart is filled with love and hope for you. I can picture your triumph. I really can. I'm doing it, now!
Still Praying for you. Does Cheez Whiz have vitamin D in it? Maybe it is also a Vitamin C deficiency. Maybe you have Scurvey. Like Pirates would get. Maybe you could start wearing an eye patch.
You're still in my prayers. I hope it turns out to be a vitamin D deficiency. Thanks for the update.
Thinking of you Susie.
I have "lurked" around and read your blog and the tales of WTF. I just wanted to say that I am sorry for all the frustration you have had to deal with and that, even if you do not always think so, you have been soldiering on bravely. I will be wishing for an answer for you.
Well, sugar pie, a deficiency sounds pretty damn friendly compared to A-bloody ELF. Hoping for you.
Hi there, I don't really know where I found your site, but I've been reading for a couple of weeks.
I have wrestled with cancer over the past year and a half, and whenever I find someone out there who is struggling with health issues, my heart goes out in a major way.
I just wanted to say that I will keep you in my thoughts and prayers. I am so sorry that you are experiencing this, and I can't even begin to imagine how frightened you are. Keep your chin up, or at the very least, keep your hope up. I've found that hope is way more powerful than anyone can imagine.
Sending love ~ Josephine
It would be great to be"d"-ficient rather than ALF. I'm b12 deficient for some unknown reason and it's taken over a year for b12 to re-up the blood. Weird. I don't process the vitamin supplement taken by mouth so I get a shot. At one point I got shots twice a week. b12 tank was way low. Just now starting to feel better. Praying for you.
I've got Double Ds. Does that help?
Oh, Susie, I do hope it turns out to be nothing more than a vitamin deficiency. That would be an answered prayer for sure!
Keeping you constantly in my thoughts and prayers, love...
Susie,
You go for the vitamin D. It has cured me of severe back pain. I do not know about ALS however, you should read at the Vitamin D Council website www.vitamindcouncil.com there is a CME there under the publications button for your doctor to read. The serum level for a sunny country is 54 to 90 ng/ml at www.sunarc.org.
A much taller Mark.
The prayers continue . . . here is hoping and praying that the endocrinologist will have the answers.
Maybe you can get a prescription for a warm and sun filled beach somewhere? Since Vitamin D and sunshine go hand and hand. See don't you wish your doctor was "hot" like me? Or at least you doctor thought along the same line as me.
The prayers continue . . . here is hoping and praying that the endocrinologist will have the answers.
Maybe you can get a prescription for a warm and sun filled beach somewhere? Since Vitamin D and sunshine go hand and hand. See don't you wish your doctor was "hot" like me? Or at least you doctor thought along the same line as me.
Blogger isn't liking me very much today. Sorry about the double comments!
mrsDoF, yea, losing income here and adding expenses has not been fun. We do have good insurance, though, I'm very thankful for that. Zillions of co-pays add up over a year. I'm not too concerned about Cali. That test can also be read in Tokyo, I'm told. My blood has a much more exciting life than I ;)
traci, thanks for saying so; I never know whether or when to say anything.
lynn, I really like the sound of that. Thank you :)
william, cheez whiz has no nutrients. Baloney probably has vitamin D, though. I could load up on that here for sure ;) Scurvy is a possibility. I'm going to try the parrot on the shoulder before the eyepatch, though.
JOMAMA!, thank you. I hope so, too.
hemlock, thank you for that.
barbara, thank you, you're very kind to say so :)
amy, yep, anything else would be welcome.
josephine, how kind of you to let me know you were here, and to say such encouraging things. I'm sorry for what you're having to deal with, too. And I completely agree, hope can't be over-rated. The best to you.
babs, wow, it really can take a long time for those vitamins to build back up, can't it? Interesting. I hope you continue to improve. Thank you for your prayers.
ladybug, so, you're saying an operation could help me achieve an adequate D level? I'll talk to the docs about that. This could be big...
anon, thank you for the info. I'm glad you're being helped by the vitamin therapy. Hopefully I'll join you in that someday.
nina, are you kidding? I wish you WERE my doctor. I'm sure you'd have me fixed right up. Who needs an M.D.?
Hmmmmmmmm...very interesting about that D thing. VERY interesting...hmmmmmmmmm...WTF indeed.
Keep on hanging in there! *hugs*
No glaze here either. The D possibility sounds veeeery interesting! Do keep us all posted here...doesn't the volume of comments tell you glaze is not a problem? :)
Ditto to what's been already said. I hope this avenue leads to a good answer - and I agree with the prescription for mucho sunshine-o on a beach somewhere - with hot and cold running mai tais (preferably brought by suitably hot cabana boy)!! :)
Hang in there, and keep us in the loop.....
Smooches!!
Not glazing over either. Still praying. And I have to say, I'd not be real thrilled with a shock to my tongue either, especially if not definitive.
Hope D is the problem - MUCH better than ALF! Then again, a shock in the tongue daily would be better than ALF.
Hang in there.
I'm hopeful for you, Susie, and I'm holding you in my heart.
I saw that line "Kind helps". You're right. Too many doctors come across as cold and unfeeling. Even if he didn't have an answer for you he made you feel better.
We're now pulling for vitamin D deficiency to be the cause of your WTF symptoms. Now if we can just figure out how to get your body to assimilate D better...
Oh sweetie! I sincerely really really really hope that the D thing is THE thing and something that somebody can do something about!
Prayers continue.
When things get you really really really down, just as yourself this "Would I rather be a PIG?!"
Much circus love to you
Gee, Susie says she doesn't have Ds and everybody gets all worked up. I've been telling you forEVER that I don't have Ds, and nobody even blinks. ;) Oh sis, I'd be so grateful to find that a coupla vitamins could ease this burden for you!! I can't help it, I'm excited at that prospect. I'm grateful you don't have ALF, and until someone tells me you do, then as far as I'm concerned, you DON'T. Now then, when you find out how to get your Ds, let me know, won't you?
kranki, Hmmmmm. Thanks for the email. Veeeeeery interesting . . .
andrea, the volume of comments is from people looking for donuts ;) Thank you. Hug baby Arwyn from me.
lawyerchik, thank you, and yes, I would love to go to a sunny place. Catch 22 -- I feel too lousy to even pack, much less travel . . . if someone would just load me up . . .
pat, thank you for your prayers, and I have to agree -- I'd rather have my tongue electrocuted daily for the rest of my long, healthy life, than have ALF. I think anyone would rather have anything . . .
kalki, than you, honey. Your heart is a nice place to be held :)
squirl, yep; it is mysterious (to me, at least) why my body isn't liking the vitamins enough to keep them around. I see the new doc on 1/29. Everything takes SO damned long. First I was told I couldn't see an endocrinologist until the end of April. But I burst into tears and became incoherent and then they suddenly had a cancellation. Imagine the luck! :)
ck, you're nuts. Circus Peanuts. A PIG!? heeheee
eclectic, I'll try to help you with your letters, once I get mine in place. Actually, my Bs are a little low, too. I wasn't gonna say anything, but . . .
Prayers are coming down the pipeline, sweetie, and here's hoping the vitamin D thing is the key to something. ((( )))
I was at a school meeting last nite and as I was leaving I noticed the Pre-K class had some interesting artwork on the wall outside of their classroom. It was snowmen-but not just any snowmen. Snowmen that looked like they had been painted and decorated by squirrels tripping on nut crack. And I thought of you, and laughed. Susie would appreciate these snowmen-she would have noticed them to. Thinking of you and praying for the best......
I havent stopped praying. Wont stop either.
I wonder- I dont know if its been said here or not- but like calcium, you need magnesium for you body to absorb the calcium. Maybe there's something your body needs to absorb the D? Just a shot in the dark. Anything is better than ALF.
Just know that you are loved, I love you as do many more. You have support and a husband that is there for you.
Love,
Dawn
Hi Susie ~ glad to hear questions are still being asked... can't find answered to unasked questions, right? ...because of my mom's illness and poor health, they drew blood from her so frequently, that her veins became too thin and damaged to continue, so for 4-5 years, she had a catheter (sp!?) in her chest, which ran a tube to her jugular for her frequent blood withdrawals. She had to inject anti-clotting agent into it at least 2xday and couldn't swim or hot tub or soak in the tub. I remember mornings, eating my cereal with one hand, while clamping her catheter down with the other, while she prepared a syringe with anti-clotting agent.
She was a huge vitamin taker - - Dr's said her efforts may have been what prolonged her life for years... keep on the vitamin D bend! My body has a hard time absorbing D vitamins. I was having numbing sensations and the dr. asked me about supplements. I told her about my vitamins and she said I was taking too much B and to stop all but a multi-vitamin, w/o any blood work... I came back in a few weeks, doing worse. Blood work was ordered, and results found my B vitamins were low enough for nerve damage!
Docs mean well, but don't always and can't (limited knowledge) consider everything. Keep on it, girl! But make time for love and family--although I'm not worried, that you won't. You rock, Susie! Healing vibes from Vegas, always comin'atcha!
Hey you, I'm glad at least SOMETHING showed up that you can do something about. Fingers and everything else crossed on the rest of it. You've got a veritable army of us praying for good news for you and don't ever forget that. Keep us posted and I hope you're having a good week. xx
What a long, strange trip you've been on. My thoughts and prayers are heading your way.
*Sending D's to you, plus bringing Dr. House over to cure you. Just make sure you have Scotch.*
;o)
Won't stop until WTF is gone for good and you are feeling good again.
You are in my thoughts.
thanks, ortizzle. It is good to have some other possibility to consider.
deneen, thanks for thinking of me and making me laugh ;)
peaches, I know a lot of those things work together. I got my calcium checked this week, too; no results yet. We'll see. And I'll write to you very soon, love.
annejelynn, thank you. For all of that. Big hugs to you, and I will keep taking my mega vitamins. I believe I'm doing better than I would have otherwise, because of them. When I heard the "D" was low a few months ago, I started taking everything, within reason.
platy, thank you, dear one. I'm doing OK. Happy to have the army. Or the possum :)
denise, yep. Long and strange. Thank you for your prayers.
MoDis, thanks for sharing your Ds. I've tried so many docs, but to my knowledge, not a drug-addicted one, yet. I'll see if I can find one...
So glad you gave us an update. Ditto to all the above...nothing glazed over, still very much want to know what's happening, always praying.
- Lotus Lynn
Damn, Susie! There must be a physician somewhere who can come up with an accurate diagnosis! You are, of course, still in my prayers!
Good GOD woman.
We love you.
I want you to get well and get answers SOOOO freakin bad.
We ARE all thinking of you! As you can already see.
Love & Hugs
I am sending you a case of vitamin D milk and a case of sunscreen as we speak.
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