neuro appt. today

[sdsyd]

Well- heres the skinny. I am going to trial provigil to combat fatigue. Begin OT/PT to monitor strength/ build endurance. HE talked to us for a good hour about ALS. He asked us where we were at emotionally if he were to tell us today that I had ALS. I said " SO WHAT!" and he said that is where the attitude needs to remain. There are no further tests he wants to conduct until January follow-up (EMG?) I am to call him to report on effects of provigil and if I decline further. Continue diazapam for cramps/Lunesta for sleep. He watched the fasics in my feet, said I am walking slower, my grip strength is declining, but with ALS he would expect more atrophy than he sees by now. At this time he says "I'm not going to say you don't have ALS" what you have at this time is: "fatigue,weakness,fasiculations,cramping,brisk reflexes and a good attitude"

So- whatch'all make of that?

Love,
Cindy

 

[Zaphoon]

Cindy,

I think the doctor is being cautious. At this point, he doesn't seem ready to make the call on putting a name to what you have.

I know its tough not knowing the cause of your problems. In a way, there is still a lot of hope that the diagnosed will be something other than that of a neuro-muscular disease/disorder. Chances are, once the diagnosed comes, you will probably be going for a second opinion anyhow. I, for one, am not looking forward to dragging that cat through the mud.

Hang in there. I'm hoping for the best for you.

Zaphoon

 

[planningguy]

Cindy,

I like his way of thinking and helping you stay positive. I found Provigil to be helpful for me in fighting fatigue. My only side effect was a mild headache now and then. You might want to make sure your dr. thoroughly vets it with your insurance, though. My insurance requires pre-approval for it and a diagnosed. Depending on your carrier, they might be more lenient. It's a pricey one to pay for on your own (about $375-400 month for the dosage I was taking once a day... Sorry I can't recall the mg off the top of my head).

In any case. Best of luck. We're cheering for you.

Robert

 

[sdsyd]

thanks guys. We took it as a positive visit.

Did the provigil help right away,Robert? I am hoping it helps enough so I can get back to working my regular hours. Having the paycheck cut in half has hurt. Thanks for the heads up about the insurance info. I'll look and see if there is a generic form as well.

 

[CindyM]

Cindy- I don't know what to think, as I am sure you don't either. It is awful having this hang over your head, isn't it? One thing for sure is with an attitude like yours, you will manage whatever the future holds. Hugs, Cindy

 

[laurel]

Provigil

Well- heres the skinny. I am going to trial provigil to combat fatigue. Begin OT/PT to monitor strength/ build endurance. HE talked to us for a good hour about ALS. He asked us where we were at emotionally if he were to tell us today that I had ALS. I said " SO WHAT!" and he said that is where the attitude needs to remain. There are no further tests he wants to conduct until January follow-up (EMG?) I am to call him to report on effects of provigil and if I decline further. Continue diazapam for cramps/Lunesta for sleep. He watched the fasics in my feet, said I am walking slower, my grip strength is declining, but with ALS he would expect more atrophy than he sees by now. At this time he says "I'm not going to say you don't have ALS" what you have at this time is: "fatigue,weakness,fasiculations,cramping,brisk reflexes and a good attitude"

So- whatch'all make of that?

Love,
Cindy

Hi Cindy,
I take Alertec(it is our Canadian Provigil) for fatigue for my MS (hubby has CIDP so we have two autoimmune diseases in the family) and I notice on my medication sheet it says "There may be an interaction between modafinil and any of the following:

* amantadine
* amphetamines
* appetite suppressants
* birth control pills
* bupropion
* caffeine
* cocaine
* cyclosporine
* decongestants
* diazepam
* methylphenidate
* ketoconazole
* erythromycin
* fluoxetine
* phenytoin
* propranolol
* theophylline
* tricyclic antidepressants (e.g., amitriptyline, imipramine)
* warfarin

So I just wanted to bring that to your attention since you take diazepam. I'm not sure what the interaction would be. I take Zanaflex for muscle spasm and the Alertec once daily for fatigue with good effect from both and no problems taking them together.
Laurel

 

[lydia]

Wow Cindy, I don't know what to say. Such a turn of events. Please keep updating, I know I as well many others, will be thinking of you often.

Lydia

 

[planningguy]

Cindy,

I found that if I took it at breakfast I would start to feel the perk up within the first hour of being at work. I would also crash a little bit in the late afternoon as it started to wear off. My coworkers certainly noticed a difference, and said there was a night and day difference in my energy level.

Robert

PS Laurel's list also mentions a potential caffeine interaction, so be careful if you are a big coffee drinker or such. I washed mine down with a high caffeine beverage plus some, and found myself a little jittery (Where was this in grad school when I was pulling those all nighters ).

 

[Sammantha]

ALS is a disease that is almost entirely based on clinical exams over a long period of time. If you are developing slow they feel no need to diagnose. If they misdiagnose you it could be a big lawsuit, so they wait until there is no doubt what so ever. I used to be on Provigil and i loved it. I was working at the time and falling asleep at the wheel or falling asleep when the kids went down for nap and i was doing paperwork, i had to do it standing up. The provigil did not give lots of energy but it switched off that thing in your brain that forces you to fall asleep no matter if you want to or not. Good luck with it, i also had no side effects! Which is a big thing for me. Just be careful because if you do not have good finances it could be difficult to get used to the medecine, then one day not be able to afford it.... Best Wishes, Sammantha

 

[sdsyd]

thanks for all the tips. My husband has good ins. through the hospital where he works. We pay 4 dollars for most scripts, but I do pay 35 for my Lunesta. (no generic available) We aren't using it for classic narcolepsy, but to see if it will help me combat fatgiue and Dan is going to speak to pharmacist about adjusting diazepam. I only take 2.5 mg in afternoon to fight cramps- bought some tonic water though,too and then I take 5 mg with Lunesta a night for sleep.
e,
THanks again for all the advice, have a great day everybody! I am off to work and todya am doing a group so I can see my caseload all at once.

Love,
Cindy

 

[rose]

Cindy, I admire your positive attitude! I think its good that the doctor actually brought up ALS with you and your husband, instead of leaving it as the 400 lb gorilla that no one wants to talk about. I wish more doctors would do this. Its also encouraging that he thinks that if it were ALS that it would be progressing faster.

Hang in there! I hope the medications combination are able to give you some help with feeling better. Have you been taking the Lunesta? I tried it back when I flew internationally as sleep is such a problem, but it didn't work for me, and gave me a horrible taste in my mouth that stayed all day. I did like the AmbianCR.

It sounds like you're trying to work "smart" by combining your caseload. To me that is another example of how your frame of mind and willingness to experiment with ways to cope are going to get you through this!

take care, & ((hugs)) !

 

[Sammantha]

I like your analogy of ALS as being the 400 pound gorilla that noone speaks of. Even when i was at an ALS clinic the doc never would utter the words, when he ordered my EMG through him even the tech said to me we are looking for carpal tunnel, when my orders stated r/o ALS! Then when i had my fourth EMG the paper said r/o MND! When i went to my last visit, Dr. M was discussing with his residents about what she found during the exam and he said "We are looking for a ALS look alike or somtheing to that affect..........then they discussed how my anxiety is so high and once that was in play he dismissed the brisk reflexes and such....... Hope you are doing well Rose, i Know you may not feel good but you look great! Sammantha