Wish me luck!

[CindyM]

Hello all. I was going to ask for some good luck tomorrow when I go back to the ALS clinic but I am not sure what exactly this "Luck" would entail. Do I want to be told once again that we must wait and see or am I ready to face the music? Oh dear...

Maybe I'll just wish all you PALS and CALS a good day instead! Best wishes to us all, Cindy

[hkohlman]

Good luck Cindym!! I will keep you in my prayers. Let us know what happens ok!!!! :-D

[patricia1]

good luck cindy I will pray for you remember the power of pray pat:)

[patricia1]

good luck cindy I will pray for you pat:)

[Beebe]

Hi Cindy, You are in our thoughts, HOPE it's not ALS. Whatever it is we are here for you. My Best to you. Beebe

[John1]

I hope you get a wonderful surprise at the clinic Cindy.

[mlb]

Good luck Cindy. Hope all goes well and some good news too.
Anna

[Al]

Hope all goes well. AL.

[CindyM]

Thanks everyone. Do you suppose the powers that be will cut me some slack if I claim that this is not a good time in my life to have a debilitating illness?:-D Well, I'm off to fight the morning traffic. I'll remember all your kind thoughts and prayers today.

Hope your day goes well also...Cindy

[CBowman]

Good luck Cindy, hope its anything besides ALS.

[liz]

Cindy -

I really hope that you get good news tomorrow. But just in case, at least you know we are all here for you.

Best wishes,

Liz :)

[CindyM]

Well I don't have a DX so I guess that is good news! We are going to repeat the EMG's and I am going to the sleep lab next month. I trip about 2-3 times a week but the Doc says I can walk on my heels so he's not worried yet. I am starting to think maybe I will be OK. Still can't climb stairs most of the time and my tongue and lips feel like they're buzzing, but these are things a person can live with. Oh, they put me on trileptal for the fasciculations but I never worried much about those symptoms. I think the lost muscles are more worrisome but he says that could be ulnar nerves in both arms. Humm.

Back to the waiting game, I guess.

Thank you all for your support. Looks like I'll be sticking around awhile. And doing all I can while I can.

[Al]

Well as some say. No news is good news. I guess. Glad they didn't tell you anything bad. Keep the faith. AL.

[Beebe]

Hi Cindy, Did you read up on Trileptal? I check up on all meds. Wonder why DRs. prescribe what they do. It is used for BiPolar and Seizures (Epilepsy) . Because it targets frontal lobe could cause you to be confused, uncoordinated, memory and thinking problems etc.. .. Just felt I had to mention this, worry about our Pals. My Best to you, Beebe

[edna may]

Hi Cindy no news is good news. I was thinking of you & sending good vibes EM

[Barbie4]

Hey Cindy

just wanted to let you know I was thinking of you. You do a great job replying on here and passing info and I appreciate it. Good Luck

Barbie

[hkohlman]

Hi cindy, Glad the doctor did not have ucky news. Best of luck with the traffic in your area. I hope you have lots of patients for all of the crazy drivers out there.

Heather

[liz]

Hi Cindy -

This sounds encouraging. :) Did the doctor suggest any other possible diagnoses or is it just more wait and see?

Liz

[CindyM]

Thank you all. You guys are great.

Beebe - I did read up on that medication and may not even take it. He claims it will help with fasciculations but so what. I'll probably try it out on the weekend but if I feel weak or confused forget it!

Liz - This is the Doctor that promised me back in July 06 that it had to be MS or Lupus or something. Now he just looks worried and says let's wait and see. I think he looks worried because he has run out of possibilities, but no news is fine by me!

Heather, Barbie, John, CBowmen, Anna, Enda May and Al- thanks for all of your kind words. I am starting to see how, when we wear out our family with concerns and complaints, we always have each other! Stay warm and enjoy your day, everybody! Cindy

[hboyajian]

This may be a completely redundant suggestion, but I wonder if it wouldn't be a good idea to get a second opinion about your diagnosis (or lack thereof). Your doctor may be very good, but sometimes a second pair of eyes can catch something that wasn't noticed.

[mlb]

Cindy, I agree with hboyajian. Maybe a different doctor can find what is wrong. I am sorry to say but I have no faith in any of them.... The idea is to go around until you find someone that makes sense.
It all starts with your Family Practitioner. It all depends how good he is and which specialist he refers you to. If he believes (and he may be wrong) it is necessary for you to see a Neurologist, then he refers you to one. The Neurologist will only check for abnormalities in his field... Similarly, if you are referred to a Cardiologist, the cardiologist will only look for abnormalities to do with your heart.... so... sometimes it is worth doing your homework and demand to be seen by whoever you believe can come up with answers. As many different ones as you need.
Recently I had a problem with my daughter's health. The specialist suggested an operation. I refused to hear of it because I had done my homework and knew there were alternatives. He asked me if there was any doctor who I trusted to convince me to go ahead with the operation. I pointed to my chest and said to him "Only me."
My life belongs to no one except myself why would I trust anyone with it?? Similarly my children's life whilst they are minors. With the internet at hand, believe me, we know more than many doctors. My GP when asked about ALS, he said "huh?" he had never heard of the illness!!!! How do you expect him to know who to refer you to???
I mean no disrespect to any doctors here but boy oh boy some of them really make my blood boil.
One example .... a couple of years ago, it was fashionable for doctors to prescribe neurofen tablets to relieve pain... sometimes they prescribed neurofen forte (!!!). It is widely available and you can purchase it over the counter easily. Well, did you know that neurofen causes heart attacks??? This is a fact. Some people have died from taking it. I think I will have to write a book about doctors as I really have too much to say on the topic.
Cindy.. please get a second opinion.

Anna

[Irish7]

Hi Cindy, sorry for not getting your dx as of yet. I went thru the same thing cindy, and thru all the testing and waiting and being told that i may have a.l.s for the last year. I found out in Jan that my dx was changed to spinocerebellar ataxia. No cure, No treatment, and fatal. I STILL have to battle this disease, but told that my life span could be 10/20 yrs. SO there is always hope cindy, and my prayers r with u.........I still come in here and check on the ppl that supported me and my wife.........and always will offer some kind of comfort and support for those with this dreadful disease...........and a special thank u to AL...........he works so hard on here with calming words and wisdom.

[CindyM]

Hi hboyajian and Anna and Irish7. Thanks for your input as it helps me to think about what may or may not be going on and what I want to do next. Here's the thing, two local docs-my gp and local neuro - said more than once they think I have ALS. They referred me to the ALS clinic, and we must remember that the folks at the clinic see much more ALS than the locals do.

That being said, we are dealing with human people after all, no matter how smart and how experienced. So the specialist promised back in July that he was pretty sure it had to be MS or Lupus. Back here in my own town we all looked at each other and said, "humm." The neuro even said, "IF the Doctor at the clinic is WILLING (emphasis on the word willing) to give you a dx of MS then that is good enough for me!"

I replied that it is good enough for me, too. Anything but ALS. But I had already joined an MS on line support group and nothing that is happening to the folks over there rang true for me. Then the tests for MS came back and I saw why. I don't have that disease. Or any of the other usual suspects.

Then he said "Benign Fasciculations" but that doesn't explain loss of bowel control or clumsiness, so again I held off from celebrating. So now I think a couple of things: first, I am not nearly as bad as the other patients at the clinic. Probably he's waiting to see if I get worse. Second, maybe I have a unique and slow-moving and mild form that will give me lots of time. Or maybe as we keep running tests something else will show up.

But from the look on this guy's face last Monday, I see worry. He was so happy to report MS or plain old fasciculations. Now he can't make eye contact. He is young. He's smart and caring, and maybe he thought, for once, he had a patient he could help. I left him with his shoulders slumped and walked through the waiting room past people in chairs - one came in on a stretcher - and felt somewhat elated. Anything is better than ALS. But seeing first hand how awful it can get helps me understand why no doc will jump to give this DX.

I've told others on this forum what I truly believe: this disease will come, or not. And if it comes I will deal with it. If not, I will deal with whatever it is that I do have. I quit grieving for my lost health months ago. And worrying about the future only causes me more bad health. So I will enjoy life as much as I can by doing what I can while I can for as long as I can. I really do not see any other way.

Thanks for listening. You guys are great!

[quadbliss]

That is the right attitude Cindy. If you can maintain that, you will do well, regardless of the outcome. :-D

Mike

[CindyM]

Thanks Mike. When they repeat the EMG's in March it will be 8 months since the local Docs first suspected ALS. I think I first went to the ALS clinic in August of '06. I know it takes time to get a DX but I wonder if this might be more time than usual. Maybe Anna is right and it is time to get another expert? You're kind of our resident expert on this disease since you've had it so long. What's your guess? Wait it out or ask for another expert? Cindy

[liz]

Cindy -

My neurologist sent me for a second opinion as soon as he suspected ALS, in fact, he made his usually slow as molasses receptionist set it up for me before I left his office. I got the impression that a getting a second opinion is standard protocol for folks like us. Can you find out if there is a particular doctor in your area who is recognized as a specialist in MND? You deserve an answer because if it is ALS, you need to be given the option of starting Rilutek as soon as possible.

That's my 2 cents.

Liz

[Al]

My 2 cents but being Canadian it is only worth about 1.7 US. I had my first opinion in Oct of 03 by the local Neuro. He sent me to a large teaching hospital in Toronto in Nov. for a second opinion. In March of 04 I went to the Sunnybrook ALS Clinic and got a third opinion. In 05 the new director of the clinic retested me and gave a fourth opinion and he sent me to a fifth opinion at another Hospital by a Diagnostic Neurologist. I have ALS but at least I've seen 5 different Neuro's and 4 of them specialize in ALS. They didn't all agree 100% at first with ALS but they all now confirm it. So it can take time to get a diagnosis and 5 opinions to some may be overkill but hey it's my life we're playing with so get the best help you can. My 1.7 cents worth.
AL.

[mlb]

Cindy. Do not sit and wait is my advice to you. See as many specialists as you can. Sometimes it pays not to tell them a whole lot of symptoms at once because they get confused and loose track. Mention the most important and those that worry you the most.

You mentioned loss of bowel control but if you look it up on the internet, you will find that this does not have anything to do with ALS and is not related to any illness. Regarding the rest of your symptoms, maybe you need to see a pathologist or a physician that might be able to also give you an opinion.

Al is right. It is your life. Do your utmost for it.

Anna

[quadbliss]

Hi Cindy,

I am the wrong person to ask concerning diagnosis. I was lucky enough to have an exceptionally bright neurologists who nailed it right away. In this area I defer to these other experienced, caring people.

Mike

[hboyajian]

We usually think of getting a second opinion when we have been handed a diagnosis for a severe illness, rather than when we have been told there is nothing found. In the case of ALS, the "I don't know for sure what is wrong with you" answer is troubling as you are then left adrift without access to some of the support you could be getting from the appropriate organizations.
In my dad's case, he went to an Orthopedic doctor about his back (severe kyphosis) and was referred to a neurologist to see if there was 'neurological involvement.' This first neurologist did what my mom described as a thorough evaluation and concluded there was no neurological problem. We celebrated this news and din't ask for a second opinion at the time. Looking at the report later, I see that he didn't do any assessments that could have indicated ALS. A year after that, still seeking help, a naturopath referred him to a physical medicine/rehabilitation doctor. She said she suspected ALS, ordered the appropriate tests, mostly to rule out everything else, and diagnosed it within a week. She referred my dad to the local MDA clinic for a second opinion. I agree that this is routine practice when diagnosing ALS. There was no question in my dad's case, as the disease was so advanced by then. Rilutek was never offered as an option, in fact it was discouraged, maybe because of my dad's age (84).
But Cindy, you are much younger and deserve every option available to you and the support services necessary to keep a quality of life.

[ellisa]

Cindy,
I hope all goes well at the ALS clinic. You are in my prayers.

Good Luck,
Ellisa

[CindyM]

Hello everyone. Well, it seems that when my GP said it was time for an opinion on ALS he chose the clinic that is connected with our local ALS association. I went to their website and found my clinic listed there and a link to this forum. So my GP did his homework well, that much we can tell.

There are other clinics and even two research centers within driving distance. Seems like one or two of the major teaching hospitals in Boston have ALS clinics and centers attached to them. So I think that if the repeat emg tests don't show anything then I will visit another clinic. But I still suspect that if and when anybody finds something I think it will be due to advanced symptoms, if they come.

Thanks for all your support. It takes a lot of fortitude to withstand the roller-coaster ride and that would be hard to do without support. For those of you who have been through this, I can see where people develop the strength to deal with the actual disease!

Hope you are all doing as well as possible on this winter weekend! regards, Cindy

[Meg1]

Cindy --

I have a slightly different opinion from many here. If you have ALS there is no reason to be in a hurry to be diagnosed. Rilutek is the only FDA approved treatment and in tests it extended life (but not functionality) by only a few months. Additionally, it's expensive and very hard on your liver. I don't take it and neither do lots of other PALS (not that taking it is wrong--it's just far, far from a wonder drug and many believe it hurts more than it helps).

IMO, the only reason to be in a hurry for a diagnosis is if there is any chance you have a treatable illness. And that's where your doctor comes in. If I were you, I'd press that sad-sack young doc to tell you exactly what he thinks you have, complete with probabilities. Use that information to decide your next move. If he thinks MS is still anything more than a very distant possibility, get yourself evaluated at an MS center--there are a number of effective MS treatments out there. Ditto Lupus and MG. Once the treatable things have been ruled out then you have a decision to make. Do you want to know for sure if it's ALS? Only you can decide. But, practically speaking, there's no advantage to a diagnosis unless you need services you can't qualify for without one.

And, now that I'm thinking about it, this entire analysis assumes you have insurance that will pay for all these evaluations.

Good luck.

[CindyM]

Hello Meg. You and I think exactly alike. Sadsack young doctor has definitely ruled out any other condition and is saying "wait and see" but I am in no hurry. Interestingly enough, we went through this with my Mom's Alzheimer’s. Some in the family wanted an immediate dx so she could get a cure. As if. Others said, without a DX she should just shape up and try harder to remember things. As if that would help.

I said then what I now say about ALS. If it comes, it comes.

I may get another opinion if nothing shows up on the EMG in 2 weeks, but I started this thread feeling ambivalent about weather it is good to know for sure or better to put off the inevitable a little longer. Today I am willing to buy a little more time before sadsack delivers the axe! Thanks, Meg. Glad you expressed your opinion.

[ltr]

Hi Cindy,

I was wondering how your EMG went? I was thinking about you yesterday and I hope everything went well. Let us know if you want to share! Leslie

[anna1980]

Well Im wondering too.Im going for EMG tommorow beacause my chick and face muscles are getting weak fery fast-I am scared to death.I will write how was it.

[ltr]

Good luck Anna. I hope you get good news. Leslie

[mac53]

Sorry this took so late to write back! I've been out of town. Praying for you and hope everything goes well. I'm still hoping for Good NEWS! Take Care. Mac

[Countrycouple]

Good Luck CindyM.. We are all with you.. in our hearts and prayers..

[CindyM]

Thank you everybody. We're still doing tests. I am beginning to think that I will be one of the people for whom it takes a little longer to DX. But I am in some sort of plateau and used to the symptoms I have so I'm taking advantage of the time to enjoy myself while I can. Your support si encouraging and verymuch appreciated! Thanks to all! Cindy

[hboyajian]

Cindy, you are always so supportive and kind towards everyone, often the first responder here. You must be a wonderful friend in real (non-cyber space) life as well. Thank you for being you. I am glad to hear you are not rapidly progressing and are embracing your life as you can right now.

[hope]

Hope everything will be okay and it is not ALS. Thoughts are with you.

Hope

[Paty]

Hi Cindy:

I am sorry but I hadn't read your post and didn't know you were going for an EMG, you know my prayers will be with you, I appreciate your friendship and I admire your fortitude to face life.

Best wishes,

Paty
Baja California, Mexico
Husband's Caregiver DX 10/17/07

[CindyM]

Thanks again everybody, both for the kind wishes and nice compliments.
BTW, if they want to test any of you for myasthenia gravis go ahead and rule it in or out but brace yourself. Not a fun test! Kind of wish I had the condition, though. Anything that is treatable is fine by me!

This weekend we are expecting 50 degree weather so I hope to take Sam the dog out for a walk. THere is a great park near one of our daughter's and if she's not working maybe she'll come along with her little dog. It will be like walking Mutt and Jeff!

Hope everybody also has a chance to get some rest and a little enjoyment this wekend...
Cindy

[patricia1]

dear cindy my first dx was MG but I knew I didnt have it because the symptoms are worse in the middle of the day and improve when you rest and the eyelids ussually droop But I was so happy to get a dx that wasnt a death sentence I tried the Mestinon and it didnt work, I never saw a neuro for 2 years after that and then went to philly and had EMgs blood test and they were all normal and he told me it was neuro muscle disease but it wasnt advanced enough to say which one and he felt it couldnt be ALS because it was so slow I stay with him for two years and he still had no clue Then I went to John Hopkins and received a dx in 5 minutes that was in 2005 in march 2 years ago now its in my arms and speech but I still walk and breathing is at 83% so ALS has many faces Pat

[CindyM]

Thanks Pat. I remember you said once before that you have an especially slow-moving type and that gives me hope. Funny but as a kid I used to think I couldn't live if I couldn't do one thing or another but of course you grow up and realize you can live any number of ways, and with any number of conditions. The real gifts in life are peace, tranquility, gratitude and love of live and people.