Im dissapointed in the responses

[SilverLining]

I would first like to say, I realize this is a forum for als & that many of you are suffering each day with a terrible disease. My heart goes out to you.

With that being said, I came here because I saw a section "Do I have Als" which LED me to believe I wouldn't offend anyone if I asked a question that LED me to believe it is a possibile symptom of als. The section reads.........DO I have als? My question was, DO I have als?

I recieved 13 posts that mentioned Searches, HOW I got here, WHY Im here, What makes me think I have als, A bunch of PINKY toe posts, A post asking why would I come to this forum..... if Im concerned go to a dr, then another post about me speaking English from another part of the world, after correcting my mispelled word?

I can relate to not wanting to answer a question that YOU may feel is stupid but IMHO I have to say, this is by CHOICE. If something seems stupid to you, why not just keep on going till you feel you are answering a post that suits you, so as to leave ROOM open for someone who MAY Actually WANT to respond with a helpful comment.

 

[olly]

dear silverlining.
i am sorry you have not had a good response to your posts since joining the forum.
i did read your post and the replies you got.

on behalf of all the members here i would like to explain................i am aware of the post that brought you here,that person had a weak toe and no other symptoms that would indicate als.
they even had a clean emg that would rule out als.
given you only have a weak toe and no other disabling symptoms that lead to question possible als then you are probably ok.
you may want to get checked by a neuro for your own piece of mind.

sometimes a little humour is added in posts,despite being ill and disabled we are a very mentally lively bunch here.................this is no disrespect to you or anyone else.

i used to comment alot on this part of the forum but found it mentally exausting as we do get some very irate,hysterical people who are convinced they have mnd even though doctors have cleared them..............they dont take "YOU DO NOT HAVE ALS" for an answer.
those who come to this part of the forum need to be patient with us...............we are not doctors but living with mnd does qualify us to determine if someones symptoms may indicate mnd or not.

 

[ZenArcher]

I'm disappointed in the questions

Tell me then what are the requirements for an ALS diagnosis and which one have you met?

 

[SilverLining]

Thank you Olly, I appreciate your clarification on behalf of others.

Zenarch? Are you asking me what the requirements are? I dont know the specifics but I know that weekness is the initial one. I beleive I have "met" the weekness Symptom.


I would only like to ask (was trying to ask) If I cant Flex (Move up or down) my toe could that be an early sign of a foot drop?

I thought it may be how a drop foot initiates.

Is there any connection with the philanges (toes) and foot drop since they are controlled by the flexor digitorium longus muscle, which to my understanding controls the flexing of the toes AND the flexing part of the ankle too.

My concern is weather my not being able to flex the toe could be the Beginning of a drop foot/foot drop, IE: the begining of als.

Thankyou for your time and again, pardon me for any confusion

Kimberly,

 

[mare]

Kimberly-

Just to clarify, ALS is not the only thing that causes foot drop.
It can be the result of nerve impingement; this is probaly the more common cause.

 

[ZenArcher]

What did your doctor test for and say?

 

[AndyDJX]

Kimberly--

I understand what you're saying, honestly. Sometimes people come here who are genuinely scared of ALS and the symptoms they have, and get taken back when they receive abrupt or flip responses. You have to understand that these forums can be inundated with people who think they have ALS but clearly do not. Thanks to the internet, the countless people in this world who get muscle twitches now end up thinking they have a progressive and fatal disease. They end up here, and the PALS and caretakers of PALS end up answering the same questions over and over to people who shouldn't even be considering ALS.

You came here with the best of intentions and even stated in your first post that you didn't find your answers in the forum's search engine. The short and simple answer is that your weak toe could be caused by any number of medical conditions, including just the umbrella explanation that our bodies are weird and do funny things from time to time that doctors can't always explain. But there's certainly no reason at this point to cause yourself undue anxiety by thinking it could be early signs of foot drop or the presenting symptom of ALS.

At this stage you're far better off asking a doctor what he thinks could be causing your toe weakness instead of searching for answers on fear-biased internet searches or forums of people who are affected by a specific disease. The "Do I Have ALS?" boards are very useful for folks who are in the "undiagnosed limbo" where doctors have evaluated their symptoms and can't provide answers. To use myself as an example, I've had atrophy, weakness and fasiculations but do not have ALS. I had these symptoms for about 3 years before I first posted here, and had seen numerous doctors at that point. This board was extremely helpful in giving their impressions of my symptoms and sharing their own experiences. I stick around now to help not only folks like yourself who think they may have ALS symptoms and most likely don't have ALS, but also to alleviate the workload of the PALS and caretakers of PALS who get inundated with this stuff.

So despite the fact that there are both rational and irrational posts in this "Do I Have ALS" section of this forum, we should all recognize that even though someone might seem ludicrous for asking if their tingling ear means they have ALS, the person behind that question is likely dealing with legitimate fear and concern, and maybe even a very real medical problem that isn't ALS. But the best thing to do with a person like that is to get them off this board and in to see a doctor who will be of much better help.

Take comfort in the fact that it is very, very unlikely that your weak toe is caused by ALS and try to figure out what may be causing this symptom with your doctor. If the weakness spreads, you have trouble walking, your doctor orders an EMG and it comes back with "dirty" results, these boards will be here for you. I truly hope that won't be necessary, and I'm willing to bet every penny I have that it won't be.

Best,

Andy

 

[serenade]

SilverLining,
I have footdrop, it was fine one day and the next day it did not work right anymore. The journey to get a diagnosed for anything seems to take time these days. But to get the answers you want you will need to see all the approprite doctors to rule in or out a problem start with your family doctor and go from there. Sorry we can't give you the answers that you seek but your doctor can. Stay away from Dr. Goggle he only gives you false information that makes you worry. Wishing the best.
Judy

 

[SilverLining]

Thankyou for your replies. I just got back from my Dr. It is a clinic type office where you can have emg downstairs & cardiology ekg too. I had a emg done and the shock thingy too. He said it was fine. Has als been r/out?

If this does turn into foot drop do I need another emg? Or will the foot drop, then be from a different source, other than als?

Thankyou for the help thusfar, I am appreciative for all you have done.

 

[Twinsmom]

SilverLining,
The shock thingy :wink: is called a Nerve Conduction Test (or NCT).
So...the GREAT NEWS is that a normal EMG/NCT means NO ALS.

Congratulations! :grin:

I don't know much about foot drop. That would be questions to follow up with your doctor about. I know there are assistive devices that can be made to make mobility easier. Best of luck to you

Peace,

 

[AndyDJX]

ALS shows up on EMGs; a clean EMG is excellent news. See what your doctor thinks, but it sounds like your ALS concern can be drastically reduced to the state of nonexistence!

 

[trfogey]

Actually, SilverLining, you seem far more interested in criticizing the answers you got than in truly getting the actual answer. No one here owes you or anyone else that comes here with a question anything more than simple civility-- and that only as long as it is reciprocated on the part of the questioner. We do not owe you answers, although most of us try to give the best answer we can from the experience we have. You received two answers of that type within fifteen minutes of making your post -- a big toe that doesn't curl properly is not the same as foot drop as it is seen in ALS.

We are also under no obligation to conduct our half of the conversation here in the way you had intended for the conversation to go when you started the thread. We can and do ask questions that you might not have expected or wanted us to ask. You are, of course, under no obligation to answer those questions, but the answers you get back from us will be affected by your lack of cooperation.

Sometimes, threads here go off-topic for a period of time. A word of advice to you -- when it happens on your thread, lecturing everyone like a crabby schoolteacher is likely to create more off-topic posts in your thread. The voluntary nature of these forums cuts both ways. If you are going to be upset with certain types of questions, answers, or behaviors on the forum, perhaps you should ask your questions somewhere else.

Finally, patience is a virtue when you are dealing with the membership on this board. Some of our members are severely disabled and use slow and fatiguing methods to get their posts entered on the board. Sometimes, that causes answers to be short and blunt, rather than tactful, nurturing or sympathetic. You might want to keep that in mind the next time you attempt to evaluate the tone of a response.

 

[SilverLining]

Trfogey, Ive learned in life, you get what you give. I did not belittle you with mispelled word corrections (like you have) & making comments about your english being from another part of the world. I came with respect &politely asked a question. As do you, I can give a list of reasons as to why I can justify my crankiness. You do not know my life status or what I go through on a daily basis. you can have the last word. It seems you always chime right on into my post with the same cocky attitude. You won! I wont come back! Good luck to you, You have obviously misunderstood me from the 1st thread.

Thankyou all for your well intended replies.

 

[trfogey]

SilverLining,

Suit yourself.

However, I would like to congratulate you on your clean EMG and NCV tests today. It must be quite a relief to, knowing that your weak toe is not caused by ALS. I hope that they find out what's wrong with your toe very soon.

 

[Zaphoon]

SilverLining,

In response to your question: "Has ALS been ruled out?", the answer is YES!

Live long and prosper!

ALS cannot be causing your symptoms if they are current during an EMG and the findings of the EMG do not indicate lower motor neuron death.

This is my direct response to your query.