Wednesday, June 25, 2008

3WW - A Light at the End of the Tunnel?

Rumor - Shake - Spontaneous

I have not been able to shake the gnawing feeling that I have been misdiagnosed. Other ALS patients, support groups and friends have also had the same thoughts. Over the last four years a small glimmer of hope has been growing as each year passes that just maybe the doctors had got it wrong, again. After all it took four neurologists and four years to go from MS to ALS.

The last neurologist I trusted dedicated his life to finding a cure for ALS but sadly he now has ALS and the rumor is he is under hospice care. I have not seen a neurologist in five years until this week, but have kept up on all the latest research. There is usually no reason to see a specialist until you need a procedure but an updated opinion couldn't hurt.

I sat waiting in a tiny exam room for the "new guy" to appear. I was there under duress by my new primary care doctor. Who was a tad uncomfortable taking me on alone. Dave waited in the chair across from me as I tried to get comfy on that cheap tissue cover. There were models of brains on every surface that held our interest until the doctor arrived.

He was about my age with a very bad toupee sitting crooked on his head. He shook each of our hands with a big warm smile. I was thinking OK here it comes, the big drawn out physical exam of standing, pushing and walking. Instead he surprised me by setting aside my file and asking me what I thought I had. That caught me off guard but surprisingly I gave him a quick answer. An illness that acted like ALS but stopped at the lungs (not fatal). Now he was caught off guard as he said "I agree" surprised at my knowledge.

He took out the dreaded rubber reflex hammer and tapped my knees. I have clonus which causes hyper reflexes in my legs. Both legs shot out like rockets as he says "well there goes that theory" disappointed. It can't be what we thought, this is classic ALS. As I heard those words my secret flame of hope was gone. He continued by asking me "how I wanted this to go?" I knew what he meant as I looked him squarely in the face saying "I want to keep fighting until the cure."

He continued to over enunciate his words due to speaking in broken English to make sure we were on the same page. Going over the procedures that would need to be done all the way to a breathing machine, at some point. Yada, yada, yada but then he said do you know about Lithium? "Isn't that for bi-polar patients?" I asked. He said there are findings that it can create new cells in the brain that might help ALS, Alzheimer's, Parkinson's etc. I had a spontaneous burst of enthusiasm and optimism. "What about side effects?" I asked and he said "it was a low dose that may make me a bit sleepy." I said " I'll take the prescription and read about it, then decide." It's not a cure but it supposedly buys time. The doctor rubbed my back and said "who knows we might be writing a paper on the miracle ALS survivor someday."

I've read some good and some bad reviews from other ALS patients. The jury is still out but there is always that glimmer of hope.


27 comments:

anno said...

This is wonderful news, Tammy! How fortunate you are to find a doctor who will listen, who is perhaps willing to hear facts and feelings he did not expect, who is willing to consider new directions. It is a great thing to have hope -- and I hope this goes well for you.

Star said...

Take whatever encouragement you can from wherever you can find it. No one knows everything about any physical challenge, and sometimes it is in using a treatment or med for one thing that shows us a side effect or unexpected result that helps in another area.

You've been rocking this thing for so long; there's no reason you can't continue to put it in its place. Take that glimmer of hope and run with it!

linda said...

I wandered into your life tonight and read some of your journey, saw some of what you love....you are right, they don't know everything and you could have some weird something they haven't diagnosed yet but how wonderful to have hope with something so simple as lithium....it is being used more and more for all sorts of brain things, including mental illness, and this just might be your ticket....I love your blog...thank you for sharing...

Lucy said...

Tammy this does sound greatly hopeful. You CAN be the miracle. We all know they exist, why shouldn't it be you? I like this doctor. I think more of them should realize the patient knows alot about themselves and Can play a part in a solution.
Good Luck with the new meds,if you decide to try it. xoxo

Eileen said...

Hello Tammy!

I think your new doctor sounds like a decent guy. He actually listened to you. What a concept.

I have never heard of Lithium being used for ALS. Wow, that is pretty amazing. I can tell you that it is a salt, you need to stay VERY hydrated when on it, have to take it with food and have your blood levels checked every 3 months or so because of the risk of Lithium Toxcitiy. Melanie is on a pretty high dose and has not had any side effects. I make sure she is able to sweat (she is) and that she drinks a lot (she does) but besides that there was really no side effects. Her psychiatrist just keeps us on the look out for that toxcitiy. It is rare, but can be serious. Overall, I have to say she has done better on it, and has had no side effects.

It might be worth it to try it and see how it works for you. There is always hope my friend, never, ever stop believing.

I like the term Miracle ALS Survivor. It suites you very well!


Did you have the muscle biopsy done for a confirmation of ALS? Don't mean to be nosey, but I was wondering. It sounds like you have been down a rough road with neurologists, getting the right diagnosis. I am so sorry to hear that. How frustrating!

Take care, my friend.

XOXOX

Kay said...

Hope breeds hope - I am full of hope for you my dear. Keep positive, it's working!

Robbin with 2 B's! said...

Hope. Whether a glimmer or a spark, it has to remain. And you're already a miracle, ALS or whatever, you understand what it takes to survive. And that's more than the doctors know sometimes.

Annie said...

I felt that hope too Tammy. Oh how my heart leapt at the possibilties. If nothing else, it sounds like you have found a doctor not interested in following the ALS script. We will all keep puffing on that glimmer of hope to keep it burning bright. Love, Annie

emmapeelDallas said...

Tammy, I hope that lithium can help, but DO read up about it, in detail, before you begin taking it. I have no idea what dose your doc is prescribing, but with lithium especially, I'd ask about therapeutic range and how often he intends to monitor that. There are many potential side effects with lithium, and sleepiness is the least of them. In doses used in psychiatry, weight gain is very common, but for the most part considered acceptable by the docs because of the mood stabilizing effects of the drug. We used it with some pediatric bipolar patients and certainly with adults, but regular blood work to monitor kidney function and therapeutic levels was always required, as lithium toxicity is a very serious matter. Good luck, my friend. I don't mean to be negative, but I'm bothered by docs who don't discuss potential side effects in detail.

Judi

anthonynorth said...

That doc sounds like a gem. A rarity. You have a great attitude to all this. An inspiration.

Greyscale Territory said...

I love the uplifting way you tell of your journey. Always, you sound as if you have final control of where you are at mentally and spiritually. That's a great army against physical enemies.

Wonderful post!

Giggles said...

Impressive, a current doctor who seems to understands your role in deterring progression! Lithium has to be monitored though doesn't it! This is very interesting news! What a positive spirit you are...I can't wait for the cure!

Love and hugs Sherrie
Another tear jerker!

Sky said...

the gardens of your new home must be exciting as you find daily surprises! you can google to learn more about the care of orchards. it would thrill me to have fruit trees! i enjoyed the pics on your sidebar.

clonus doesn't occur with any other disease?

i vote yes for the miracle person you already are and will continue to be. make history - yesssssss!

keep shining, tammy. you are such a star.

daisies said...

hugs honey ... xo

Nancy said...

All in all, I think I like this guy. He didn't sound rigid.
I'd love to hang onto that glimmer of hope. And maybe it's not a glimmer, but a bright, shining light.
Try the Lithium. It really couldn't hurt. Anyway, it may help you in other ways too! ; )
lol..pass some MY way, will ya?

Love ya girl,
Nance

Tammy said...

Eileen- I've had every test available buy unless it's an hereditary form (mine isn't) a DNA test is not yet availiable for a definitive diagnosis. Thanks for the water advise because he did not mention that.

Sky- There are many motor neuron diseases but because of my other symptoms in combo with 17yrs adult onset SMA was a very close option. Clonus is not part of SMA which none of my research mentioned. It's all about where it started, how and where it's progressing.

Judi- This doctor did not discuss monitering my blood and that gave me pause on him as a good doctor. He did say it was a very low dose but I will monitor my blood if I decide to take it. I read it is a must to do on this serious drug. I was waiting for your comment due to you knowing about drugs. :)

lissa said...

I'm glad to see you have not given up and I think you are the daily warrior - a really great one. good luck.

TC said...

I really hope this works for you. Sorry things didn't go exactly as you wanted them, but I'm glad to hear that he was willing to think outside the box with you.

bella rum said...

Possibilities! I like the idea of that. Your courage gives hope to others. May the best come to you.

Geraldine said...

Perhaps you are being led to new possibilities to consider. I am always amazed at how many people who go to one dr. get one diagnosis and then say, that's it, that's got to be the way it is. No ???'s asked, no second opinions. How sad and how naive. Keep asking ???'s Tammy and keep reading and doing your own research. I was very sick several years ago, thought I had MS (all the symptoms) but in the end it was a case of burnout and exhaustion that had practically destroyed my nervous system, all stress related. I found the best advice and results from an article I read in a book I already had on my bookshelf! It was amazing.

Hang in there and never ever give up! Hugs, G

www.mypoeticpath.wordpress.com

Remiman said...

Tammy,
I truly believe that your cure lies in that beautiful positive way you embrace life.
rel

paris parfait said...

It sounds as though this drug is worth a try - but I agree with Rel - your positive attitude, your bright spirit and your outlook on life help create healing and strength. You actively participate in your own life, therefore in your own cure. I've said this to you so many times, but truly you are an inspiration. xoxox

Joyce Ellen Davis said...

...I thought you already WERE the Miracle ALS Survivor! You are a miracle to all of us!

Tabor said...

A new set of eyes is always a good thing. I do wonder about the toupee, though! My husband had a boss and we all were sure for years that he wore a toupee...he hairline was perfect. Well, when hubby retired they went fishing and camping, etc...it wasn't a toupee, just strange looking hair.I imagine you will be the miracle patient, and just like those patients who were HIV positive and never got worse, they will discover versions of ALS patients such as you, that beat the traditional pattern.

one more believer said...

hi tammy, always so upbeat... u r a blessing waiting for revelation.. amen, that we never give up hope for cures to what ails we have... the human body is flawless in make up.. and you are proof of that... that your spirit has a strength beyond undrstanding... i get so emotional when i come here... dang... i shall never give up hope that you will find that lost link... it's the unreal that makes life believeable.. *ok, whrz a hankie*

tumblewords said...

Attitude has so much to do with life and yours is a marvelous example of that. Keep the hope going and be ready for your Miracle award!

tinker said...

Tammy, I am keeping my fingers and toes crossed that you WILL be that miraculously cured patient featured in the medical journals someday - SOON!!!!
~XOXOXO