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Did the doctor suggest any other possible diagnoses or is it just more wait and see?CindyM
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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
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
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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
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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
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
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hope
Hi Cindy, sorry for not getting your diagnosed 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 diagnosed 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.
Hi Cindy, sorry for not getting your diagnosed 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 diagnosed 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
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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 diagnosed 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!
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 diagnosed 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!
CindyM
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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
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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
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
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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.
AL.
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mlb
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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
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
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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
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
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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.
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.
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