Reading through past posts...

[KEDASO]

Hi all,
As I've posted within the past week, I am new here.
As listed in descriptions of the diseases, "MS affects the Central Nervous System, CIDP affects the Peripheral Nervous System, and ALS affects both", which is why they are called "sister diseases", or as I call them, the three ugly sisters.
I do not have ALS, but I have advanced CIDP with autonomic involvement, and am faced with some of the things that you guys are faced with, which is why it was suggested to me to come here.
If I remember right, when I was first diagnosed years ago, it was something like
7 in 100,000 people have MS, 2 in 100,000 have ALS, and 1 in 100,000 have CIDP. All three dealing with demylenation of the nerves.
---
But, I was amazed at some of the postings here. Some panicked people came or come here describing tingling, numbness, twitching, spasms, and jumped to the worst possible conclusion that they had ALS.
Wow--I find that incredulous.
There are so, SO many neurologic diseases, syndromes, and problems, that to automatically think you have ALS is unbelievable.
It took the doctors two years for me, for them to go through what I did NOT have, versus what I had. As symptoms progressed, they were able to cross off the list what I might not have, and after TWO YEARS, narrowed it down to what I DID have, with the final diagnosis of CIDP, being very rare, as is ALS being very rare.
But in the beginning, it started with my eye, then tingling, numbness, weakness, etc.
There are SO many neurological problems that have similar symptoms.
---
So, I say to people coming here who do have the tingling, or twitching, or spasms, weakness or trouble walking/moving arms...YES-get thoroughly checked out by a neurologist. And YES--it takes a long time sometimes to come to a final diagnosis because the list of neurological problems is so long. But if a doctor clears you of ALS, and you still fear you have ALS, BELIEVE the doctor. But, YES, keep after them to keep probing what you DO have. In the past three days I read some posts where the people were SO panicked they had ALS, even though they were cleared by their doctor of ALS. And I read some, where the symptoms sounded more the like of CIDP. Even with CIDP, there is a long list of variants.
Please do not PANICK when first presented with some symptoms. Go to your primary care doctor first, and describe the symptoms. He would be best to suggest a good neurologist to find out what the problem is. Do NOT become the doctor yourself, and rely on the internet to diagnose yourself. I relied on the internet for understanding, AFTER I was finally diagnosed. And there is good help out there, especially with forums, again, AFTER you are finally diagnosed.
If anyone wants to visit the CIDP forum site, which is also affiliated with Guillain-Barre Syndrome, which is the acute form versus the chronic form CIDP, then that site
is: http://www.gbs-cidp.org/forums/index.php
All the best,
KEDASO
(Ken)

 

[joelc]

Looks like a good site for some of our undiagnosed members to check out. Thanks Ken.

 

[BethU]

Ken ... terrific message, and so well put. I just hope people will read and remember it. It should be a sticky.

Unfortunately, the threads about "tingling, burning, numbness, twitching" keep building, as people sign on here (or lurk, which is fine) and don't realize that the messages they are reading were posted by people who do not have ALS. It becomes almost impossible for a newcomer to sort out what symptoms relate to ALS and which don't. I hate the thought that this forum might be sending the wrong messages about ALS to the public, but I'm sure it happens.

 

[Landau]

good post.

but what about the people who have isolated fasciculatins, cramps w/ weakness + atrophy? (starting on one side of the body, moving it's way over to the other side)

what about those people?

should they be panicing?

 

[BethU]

I don't think "panic" is the appropriate course of action, unless you're into that sort of thing. I see you have listed a lot of other symptoms in the past. I hope this post means they have all gone away.

 

[KEDASO]

Not to panic...

I do not mean to send a message that the ones with ALS should not have their questions or need of assistance or guidance answered.
But, people remember hearing about "Lou Gehrig Disease", or remember watching "Valley of the Dolls", and immediately think their symptoms is ALS.
Like I mentioned, there is a LONG, LONG list of neurological diseases, syndromes, and problems, without jumping to the worse-case-scenario of ALS, a disease which must be the worst one on the list.
I just think it more important to get the diagnosis from a neurologist, a second opinion, or even a third opinion, before jumping to the conclusion by becoming your own doctor and relying on the internet to diagnose yourself.
We don't get that much people at the CIDP forum that don't actually have Guillain-Barre Syndrome or CIDP, as most people have never heard of those diseases due to the rarity. People actually diagnosed or have been told of the possibility, or relatives of, usually come there, though every once in a while there is someone there that does not have it, and ends up with another neurological disease on that long list I mentioned.
---
As far as my own symptons, I take a handful of drugs three times a day to help control everything. But a vent is in my future, which is what brought me to your site in the first place.
With sincere thoughts,
KEDASO

 

[rose]

Ken,

Thank you for the very thoughtful post. I understand your surprise at finding the amount of people here who seem disproportionately worried about having ALS. I was, and continue to be taken aback by it too.

The reason behind this phenomena has been discussed on here from time to time, the most prevalent opinion seems to be that it is due to "cyberchondria" the google version of hypochondria. And the effect is one of snowballing, people that "google" twitching, for example, are steered to a forum such as this, hence they post, and there are responses, therefore the more this site (or others similar to this one) gets moved up in suggested sites by the search engines,, when the next person searches by "twitches" or whatever....

What puzzles me is how some seem determined to have it. We've even discussed this at home, where it was suggested that if it wasn't ALS these people were obsessed with, it would be a brain tumor or something else. I don't know though, maybe because there is no existing test yet to prove ALS, that its rather by process of elimination, that keeps it in a class of its own.

I remember an analogy BethU made one time ~ some seem to take a neurologist's opinion with no more value than they would their grocer's! (Don't know why that sticks out in my mind) But, it does seem that way. Some know they have an unfounded fear, and do everything they can to fight it, and there are others who just aren't interested in hearing that they don't have it!

Then, there is the group who have mysterious, progressive problems that baffle good doctors; and I think this is a great place for them to keep company, have some contact with others who may share symptoms. A search engine may have originally steered them here, but they can get good advise and not feel as isolated.

I hope you continue to be active here, it seems like you have a lot of experience with the complexities of the diagnostic process, and, can also help us learn more about CIDP, not much is known about it here either. Laurel's husband has an unusual variant of it, and Cindy (sdsyd) has it as only a "possible" diagnosis. They're the only two active members who come to mind as I write this.

Good luck as you continue to fight this, you've been at it a long time, and I hope you never give up!

 

[laurel]

Landau's question

good post.

but what about the people who have isolated fasciculatins, cramps w/ weakness + atrophy? (starting on one side of the body, moving it's way over to the other side)

what about those people?

should they be panicing?

Hi,
My husband has the symptoms you describe and he has CIDP--MADSAM variant.
Laurel

 

[keane]

I think there are aspects of this phenomenon that you might need to recognize. I apologize in advance because I have recently been diagnosed with an often fatal disease that is usually misdiagnosed.

What if you went through the entire process you described, but ultimately instead of being told you have a definate disease process, you were told by neurologist after neurologist that you do not have a serious problem? A small subset of regulars here know that their body is telling them that something is wrong. The medical industry, however, follows the logic that if your symptoms and test results do not fit a certain set of parameters, then you are probably not at imminent risk of dyding, and their job is finished. They generally do not understand the innate need for validation.

Secondly, recognizing that the information age has presented a whole new class of informed patients, the medical field needs to develop a set of responses and make these their standard operating mode. If a person comes in with twitches, and seems psychologically obsessed, the physician needs to have in his/her "tool belt" a proven method to help the patient return to quality of life. It should be seen as an important condition that is causing psycological fear and financial pain to our country. This should be seen as a responsibility by the medical field to develop this "standard work"

Thirdly, the industry needs to develop better methods of training physicians in the rapidly changing body of medical knowledge. As a senior quality manager in a large company, I have been appalled by the general lack of knowledge in new technology and diseases. I have adult onset acid maltase deficiency. Ten years ago I went to a half dozen neurologists, and ultimately to a university hospital with the "classic presenting symptoms". A standard biopsy was performed revealing structural abnormalities, but no follow up stains to identify metabolic myopathies were ordered. I knew something was wrong, so I worked out with weights to constantly retrain my muscles. Because my self-prescribed treatment worked, I was told that nothing was wrong and there was no need for followup.

The only reason I was diagnosed a few weeks ago is because I finally went to the Mayo clinic and was given a test that is now considered the gold standard for the detection of the disease. I confronted some of the previous neurologists in what my wife calls my "boss voice" and one even began to cry and all admitted that they knew too little about this disease that affects an estimated 1/40,0000 adults. None knew about the avialability of the GAA test that has been available for at least five years and can be sent to a few clinics in America.

By the way, if the doctor had found the disease 10 years ago, it is possible that I would have been able to condition by diaphragm muscles, which are now paralized to the point that I have minimal chest expansion when I breathe and now use a bipap in the evenings and night.

 

[doy97]

Keane-
Thank you for presenting the other side of this converstion. Although I'd like to think that most doctors are to be trusted, the term "quack" did not invent itself. And although there are many people out there who are indeed hypochondriacs, there are also those who, like you said, know something is wrong even when the doctors say there isn't. Thank you for your viewpoint.