No DX Yet...

[CindyM]

Well I just got back from the ALS clinic and Doctor Sad-sack told me that yes, I have a neuro-muscular disease but he doesn't know which one yet. He also said at some point we may want to do a muscle biopsy but in his opinion, at the stage my symptoms are at, he doesn't expect it to be very conclusive just yet.

He also said that until now he'd been looking for just neurological problems. Gosh, he's so far behind in his thinking than the rest of my Docs and even my own self! Plus we discovered another skill I have lost: I cannot jump off the floor any more so I guess no more hop scotch for me! :-D

He also told me a lot of what I already knew: he said I would not get any better (duh) and that I might not get worse for a long time (I know.) And he told me to come back in 2 months - presumably to see if I get worse during that time.

Then I showed him a book I picked up in the lobby by Kurt Vonnegut. Inside is this joke: "There is no reason good cannot triumph over evil if only angels will get organized along the lines of the Mafia." And he actually laughed. So we might have to change his kicname.

Meanwhile, I am going keep on keeping on!

[JenniLee]

Hi Cindy!

I haven't done this much over the past 2 weeks, but you actually made me laugh with you post about your doctor. I'm sorry you have to go through this, but I am in awe of your lighthearted humor. Teach me oh wise one! Tell me how you do it!

With much admiration,
Jen:-D

[ltr]

Hi Cindy,

Well, I guess he didn't really tell you anything you hadn't already figured out by educating yourself,right?! Isn't it something that it takes so long to get any kind of diagnosis that we end up so educated on the stuff that we kind of know what is going to happen next. Did he give you anything positive? Hopefully he is one that will get to investigating so whatever is happening to you can be stopped. By the sounds of his nickname, I'm thinking he's not. So many of us meet these kind of docs. But, from what I know of you Cindy, you'll put him to work, right? After all, it's almost time for us to get out and plant flowers and all that other great spring stuff. What's his plan for the next two months, just keep on keeping on? Leslie

[CindyM]

Jen- you have to have a black sense of humor to survive in my family! When you get a change look though some of my old posts about the crowd I live with and you'll see what I mean! Plus, there's no use crying over lost muscles. I grieve but then get over it.

Annamarie and Leslie- someone on this forum nick named him Sadsack because he looked so sad when the tests didn't show the DX he suspected, which was MS. But as I said, the rest of us are further along in our thinking.

One thing he said today may help others in my boat. He said anything that they will find from this point forward will not be treatable. (We know this, though.) Then he said a muscle bio right now may not show what it is, so why be in a hurry to do unpleasant tests for poor return on a condition that is not treatable. (I'm paraphrasing but that was the gist of it.)

I actually agree. ALS, PLS, whatever: what's the point of knowing now, VS next summer, which one it is? This is one time when it may actually help to stick one's head in the sand. I can go plant flowers and if I get worse, well, no big surprise. If I stay the same (knock wood) then yipee. Cindy

[Al]

Hi Cindy. Well like they say, no news is good news I guess. As you say it probably doesn't matter if you have a diagnosis or not but sometimes it is better to know. Just take it one day at a time. AL.

[anna1980]

Cindy, finally somebody told you that is something with your muscles.it is a good news baceause it will be easier to search for the reason why you have so much problems.My docs said Im healthy, so I will have to wait when I will be chocking or will stop talking, than I will have my DX.Hope they will find whats wrong with you.

[CindyM]

Al- I never thought I'd say this but I am living in happy denial right now. I just want to believe that I'm not going to get much worse and everything will be fine. If I get worse I'll deal with it.

Anna - You need a better line of thinking. You will poison your sense of well-being if you're not careful. Look at Quadbliss and see that even if the worst happens you don't have to give in completely. Regards, Cindy

[anna1980]

Cindy-I think Im better than before, after my EMG.But I feel just angry, because of docs., if they have EMG and symptoms, which I describe, why it is so hard to say something.Maybe I should do more blood test etc.They say only "no brisk reflexes, no babinsky, you are healthy".So how to trust them.Anyway im depressed a little bit, because we have winter in Poland full of snow, cold and wind.Waiting for spring.

[liz]

Anna -

One thing I find reassuring is to focus on getting information about all the equipment and products that are out there to help us along. I'd rather focus on the solutions that are going to help me manage my situation. I'm amazed at the number of devices and contraptions people have invented to help folks like us out. It makes the changes changes that are coming seem less scary and planning ahead makes me feel more in control.

Liz

[quadbliss]

Liz,

That sounds like a great way to keep your spirits up. Good idea! We are lucky to live in a time when we have so much technology available to us. :-D

Mike

[JACKIEMAX]

hi - maybe some of you have read some of my other posts. my husband does have als, was dx in november, but he was the one who researched it first and informed the docs that he had it. they didn't have a clue, and did two major surgeries on him that were not necessary only because they didn't think of als.

there are days we have a sense of humor and laugh at just silly little things. but spring is here, and my husband is sooooo yearning to be outside planting flowers, trees, mowing our 2 acre yard, and working on his bonsaiis, but he just cannot do it.

first of all, he does not have the strength, and secondly, his respiratory problem is so bad that the dust and pollen would be disastrous.

i've learned so very much from this forum, and i agree about capt. al. there will be a special mansion for him in heaven - painted red and a bell and ladder outside, just for him....

jackie

[patricia1]

When i read the post I see nobody gets a dx right away it took me 5years and like you Cindy I was in denial thinking everyday I will wake up and be better now I wake up wondering will I be worse .I know now that nobody knows everything and we are in gods hands and only he knows the outcome the doctors are only quessing .Pat

[anna1980]

I was the first who told docs. about ALS also.But they dont agree, because I have only lower motor neuron disorder.

[midwestgirl]

CindyM I think your attitude is much more healthy - happy denial! But, is it really denial - maybe not! I must admit, I have not read all of your posts, but I would want to hope that maybe it really is not ALS, maybe something that doesn't progress, or maybe something that progresses very slowly. If there was a treatment, then I would see the benefit to push for a dx. The mind is a powerful force, and good thoughts just may make you feel a little better, and benefit you much more.
Although, with that said, to have these symptoms and not know why would be frustrating. And I do agree about doctors, some seem so clueless. I guess we all hate to admit, but medicine is still a bit of trial and error. My mother's doctor seems to wait for me to make suggestions - isn't this role reversal. I'm left wondering if I need to ask for anything else to be done.
Enjoy the first day of spring and good luck to everyone!

[ltr]

My doctor actually asked me if I had any thoughts of what to do next! Granted I have worked in the hospital for years, but I have no medical degree. I agree, that getting a diagnosis is very important, not only for treatment, but for your family and yourself to get help. I guess being out of touch with the reality of it can make a person feel as if nothing is happening, but then you can lose out on the recovery of a treatable illness. That's what I am still hoping for!

[CindyM]

Hi Midwest Girl- I think what I am in denial about right now is the little voice in my head that says maybe I should have some of the other Docs look at my test results. But I figure if my symptoms get worse then we'll deal with it. Meanwhile, I choose to believe they won't get any worse. Sadsack says he has about 5 or 6 people in his caseload who get all the symptoms of ALS but the symptoms never get bad enough to show up on tests. He said I should also prepare myself for getting worse but he hopes if that happens it won't be for awhile yet.

I can live with the fact that medicine is not an exact science. And after visiting this board for so many months I can live with the fact that ALS does not behave in an exact fashion. So its back to prepare for the wrost and hope for the best.

[CindyM]

JackieMax- I sympathize with your hubby. There's a real longing that comes from thing we love and can no longer do.

How about all of the rest of you nice folks: any tips for Jackie's hubby? Certainly he deserves to enjoy the hobby that brings him the most pleasure!

[ltr]

Jackie, can you bring some bonsaii's and flowers to him? I know it's not the same as getting right out there in it, but maybe he can find enjoyment dealing with some plants inside. Happy Spring! Leslie

[MtPockets]

My answer to a similiar thread:

Just a thought for all of you without a diagnosis yet. It might be a good time to get some life insurance if you do not have any, because after you have a DX of ALS you will not be able to get life insurance anywhere.

If it turns out you do not have ALS you can always cancel the policy. Just a thought about pre planning for the future of your families. I wish you all the best with your tests and docs. Prepare for the worse and pray for the best.

God Bless
Capt AL

[zac111]

well i got my mri of the brain and cervical spine back and they were normal i asked the nurse what they thopught and she pulled my case file and told me more than the doc did his notes say pure motor neroupathy she talked to him while i was on the phone and he told her that i just didnt fit the age group for als im 34 guess he hasnt read some stories that i have.on the up side i have an appointment with another nero for a second oppinion i called and tried to get an earlier appointment and of course they said they were booked up but then thye netro called me himself and asked me what was going on and i told him he worked me in 2 weeks from now he specialises something to do with the motor nerves so i might find something out soon so far just have slow motor nerves with decreased reflex in arms.

[ltr]

Hi zac, that's also what I am being treated for, neuropathy. I start meds tonight and see if it helps any. Did the doc give you anything?

[zac111]

no not yet hes sending me to another nero i go on the 13th hes some kind of specialist in the field of the motor nerves but my other cant rule out als he says he doesnt think i fit the age group but i know it can strike anyone i hope it is neurophaty time will tell now i know i hurt alot guess thats the motor nerves that are slow causing that.i hope they try something soon to treat this to see if anything helps.by the way what kind of neruophaty are they treating you for?

[ltr]

I have no idea what kind of neuropathy it is. I am going to find out, but they gave me Neurontin. I am taking it tonight because I hurt quite a lot too. I will let you know how it works.

[zac111]

thankx ltr and good luck i hope it works for you.