Thread- moved from Please Help

Status
Not open for further replies.

rmt

Distinguished member
Joined
Sep 18, 2019
Messages
126
Reason
CALS
Diagnosis
07/2019
Country
US
State
WA
City
Seattle
@cmilviper, it sounds like your symptoms have all come up in the last 4 months or so. PLS and upper motor neuron dominant ALS tend to start in one area and progress slowly, so having symptoms in your torso, both legs and both arms this fast would be incredibly surprising. It would be an unbelievably rare presentation of an already very, very rare disease.

@TippiLeigh, correct me if I'm wrong, but you have had symptoms for about 2.5 years and it started in one limb and slowly over time spread to other areas. How long was it before you had symptoms in all your limbs and in your torso? That information might be helpful for cmilviper.

@cmilviper, I recommend that you go to your appointment and don't mention ALS or PLS or motor neuron disease at all. Describe your symptoms and timeline, get an exam and see what the doctor thinks it is and what the next steps might be. But don't ask if they think it is ALS or PLS. If they suspect either of those, they will tell you.
 

TippiLeigh

Active member
Forum Supporter
Joined
Jun 13, 2020
Messages
92
Reason
DX UMND/PLS
Diagnosis
07/2020
Country
US
State
CA
City
XXXX
@rmt I've known there was a neurological issue going on since about March 2020. But I can pinpoint some early symptoms back to 2018. But once things were noticeable last year, I did have truck spasm and spasms in my arm and legs. Widespread twitching. Very erratic symptoms as it pertains to spasms, tightness, and fasciculations. Those were everywhere at random times. (Which is a reason I believe myself and so many that come looking for help here get blown off, because it doesn’t happen the same way for everyone, ESPECIALLY if you are UMN dominant. It’s the failure (weakness) of abilities that has had more of a progression, starting with the left foot and working it’s way up, for me. And again, this is just MY progression of symptoms. I can’t believe how many times I’ve heard from neurologists that there are no two people alike in this disease and it’s ridiculous to try and pigeonhole everyone into a classical presentation. One just doesn’t exist.
 

rmt

Distinguished member
Joined
Sep 18, 2019
Messages
126
Reason
CALS
Diagnosis
07/2019
Country
US
State
WA
City
Seattle
It is true that everyone is different. But I would point out that you have actual failure. Cmilviper does not. That is why you were diagnosed with PLS (or ALS).

I know you want to make sure people aren't blown off for having just upper motor neuron symptoms. I get that. But it is also important to consider that you are jumping the gun a bit to suggest PLS (which is so incredibly rare) based just on clonus and twitching with no actual failure or clinical weakness. The first step for anybody should be an doctor's appointment. And to see what a doctor thinks without bringing ALS or PLS into the conversation.

For the record, my husband has only upper motor neuron signs and was told at his very first appointment with a general neurologist that it might be motor neuron disease. The doctors know what to look for. That's why the experts here always suggest a doctor's appointment and want to know the results of the appointment.
 

Bestfriends14

Very helpful member
Forum Supporter
Joined
May 7, 2017
Messages
1,266
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
Thank you for clarifying your husband's progression @rmt. My husband was told, as well, at his very first neuro appointment that something was wrong. They knew it was neuromuscular from the outset because of his constellation of symptoms. They didn't care if he had been twitching or not, they didn't care if he "felt weak" or had "tight, burning sensations" (he had none of those issues, anyway), what they were worried about was the progressive failure of his left foot. It continually kept getting worse and worse over a 17 month period until, by the time he was officially diagnosed, he was already walking with a brace, could no longer run, and no longer drive a standard vehicle.

For those replying with a constant contrarian voice to those who do not see ALS in Viper's or any other CIHALS' picture, this is needlessly scaring people and only serves to fan the flames of anxiety in an already frightened person or persons.

Viper, in 4 months, you would not have symptoms so widespead and not have failure. The disease does not manifest in that way at all. Your neuro appointment will confirm this. I hope you can find some peace afterwards.

Please report back after. Do take care until then.
 
Last edited:

TippiLeigh

Active member
Forum Supporter
Joined
Jun 13, 2020
Messages
92
Reason
DX UMND/PLS
Diagnosis
07/2020
Country
US
State
CA
City
XXXX
I never once said he had PLS or upper motor neuron disease or even suggested that he did. I explained MY story. And how MY progression went. And no I did not have failure right away. Many people that start off with upper motor neuron dominant ALS don’t have failures. Some don’t for many many years. I only had hyper reflexes, foot drop, and some fatigue. The failure and weakness came later.

i’m not going to lie and ignore a human being coming to this forum who literally mentioned several symptoms I had and pretend that I didn’t? I believe in open, honest, and kind conversation. I gave him no recommendations. No advice. I literally only listed my own personal symptoms. He can take what he wants from that.

But unfortunately I know someone who previously came on this forum and was told they don’t have ALS and to go see an orthopedic surgeon. Well guess what? This poor person did what someone here suggested to them they went down the wrong path for an entire year. Ended up with a horrible horrible debilitating back surgery. And guess what? The surgeon had to apologize and let them know that they actually did have ALS and they screwed up. Not all doctors are perfect. They will miss things. And they will perform surgery on people that don’t need it. It’s terrible but it happens.

What we should be doing in the “could this be ALS forum” is sharing our personal stories. And I would add to that. I think it should be the PALS making most of the comments. I’m sorry caregivers, but you don’t know what it’s like to have ALS. You know what it’s like to take care of someone that has ALS. It is different. My husband does not know every single feeling I have in my body. And he never will. He’ll never know the struggle I go through. He knows them from the outside. But I know what I feel on the inside. I know my body better than anyone on this earth. And it’s so disrespectful for you to come here and act like you know when you don’t.

We should never be giving advice. We should never be telling people they don’t have ALS that is just as dangerous as telling someone they do have ALS. I have never once told anyone on this form they have ALS all I’ve ever done is said here are my symptoms you should go back to your doctor and continue working with them. It’s my same statement over and over and over again. Yet every time I come here I’m told that I am too nice to people and it will encourage people to ask more questions. Well, GOOD!! The more people that know about ALS the better! Nobody owns this disease.

and I can tell you from first-hand experience, the only thing that freaked me the first time I came here were all the people being mean to me and dismissing my symptoms. That was scary. I felt alone. It was terrible. THAT’S what me anxiety!! THE DISMISSIVE AND CRUEL PEOPLE. The people that reached out to me privately and shared their experiences with me, that’s what I needed. That settled anxiety. Not the responses like “congratulations! You don’t have ALS!” That is the biggest slap in the face anyone can experience. Not being told you don’t have ALS. Having someone being sarcastic to you when you were at the lowest point of your life. That drives people to madness. That’s why you have people coming back to prove themselves. They’re pleading with you for their lives and your slapping them down

The only contrarian comments in this page are the ones that act like they’re doctors and can diagnose somebody doesn’t have ALS from two paragraphs of the Internet. That’s dangerous and irresponsible.

Just because you don’t like me, doesn’t mean I’m not right. I could very easily never come back to this form again. And I have sworn up and down so many times that I won’t because it does stress me out to see how cruel people are on here. But you know what, I sort of have this thing about standing up for people who I see being treated poorly or unkindly. It’s completely unnecessary. Unfortunately it’s shown over and over and over again here. So, unless you kick me out, which is your prerogative, I will continue to come back and share my personal stories. Because I was someone who needed this forum and most of you turned your backs on me at the beginning. I can’t just look the other way at this type of injustice.
 

rmt

Distinguished member
Joined
Sep 18, 2019
Messages
126
Reason
CALS
Diagnosis
07/2019
Country
US
State
WA
City
Seattle
@TippiLeigh, I think the problem you are having with the people on this forum is because of what you think the "Do I have ALS" should be.

You think "What we should be doing in the “could this be ALS forum” is sharing our personal stories."

Everybody else seems to think "We should be helping people to navigate their symptoms and figure out if they have ALS or not".

This is a HUGE difference. It isn't about telling your story or sharing your symptoms. It is understanding which symptoms to focus on, which ones need an immediate visit to a specialist, which ones should be followed over time, etc. And helping scared people get the help they need, from doctors of various specialties.

If you want to tell your story, there is a PALS section where you won't have to deal with us annoying CALS.
 

TippiLeigh

Active member
Forum Supporter
Joined
Jun 13, 2020
Messages
92
Reason
DX UMND/PLS
Diagnosis
07/2020
Country
US
State
CA
City
XXXX
I think you’re splitting hairs. Me sharing MY expedites DOES help people navigate and compare their own, thus helping them navigate whether or not they have ALS.

What I find odd, are CALS wanting control over a sub-forum, geared towards people who are coming for advice about their symptoms that could eventually turn into ALS, making them a PAL. Symptoms that CALS may have never experienced in their life and have no business speaking to. So yes, I’m extremely annoyed.

From what I’ve seen on this page, there is not one single CAL that is a neurologist. Therefore, none of you are qualified to tell someone they don’t have ALS. And since none of the CALs except for one that I’ve ever known of, have ever had ALS themselves. So while you have experience taking care of a PALS. You don’t have experience being one. I do. And I will continue to share my symptoms with anyone who has questions so that they can LEARN from MY experience, how it is similar or different. That DOES help. THAT is real life education. Not what is being done here. What’s being done here is not that.

a long time ago David suggested that CALS don’t post on this sub-forum, but I see none of them took his advice.
 

rmt

Distinguished member
Joined
Sep 18, 2019
Messages
126
Reason
CALS
Diagnosis
07/2019
Country
US
State
WA
City
Seattle
@TippiLeigh, it is weird that you are so adamant that everybody is different and so the experts' knowledge of symptom patterns doesn't matter, but then are also totally adamant that telling people your specific symptoms is helpful in some way. Can't have it both ways.

Anyway, this is my last post to you @TippiLeigh. Your tone is very nasty and rude. And your anger against CALS is bizarre to me. I hope that being rude to dying people and their caregivers is somehow making you feel better about your situation.
 

TippiLeigh

Active member
Forum Supporter
Joined
Jun 13, 2020
Messages
92
Reason
DX UMND/PLS
Diagnosis
07/2020
Country
US
State
CA
City
XXXX
It’s not rude and nasty to hold people accountable for their terrible behavior. I think there are a few different people in this forum you should direct those comments too. Because if me being frustrated means that I can’t share my own symptoms without a CAL acting like they know what it’s like to be a PAL more than I do, then you have a very weird definition of those words. Because the abhorrent behavior some of these CALS have thrown at poor souls coming here at their darkest hour of need is well, I don’t even think there is a word for such terrible behavior. Rude and nasty don’t even cut it.

And your snide comment at the end about being rude to dying people, well isn’t that just the pot calling the kettle black, since you’re by definition you are being rude to a dying person? Does it make YOU feel better about your situation? Because I don’t. I have 4 children, including one in 1st grade, that are going to have to bury their mother way too soon. And already have to deal with the fact that their mother can no longer do most things she used to be able to do for them. I have to live with that ever day. I have to live with the fact that my father will now have to bury his FOURTH adult child, his baby. I have to live with a husband that cries daily knowing that the love of his life won’t get to do any of those memories they talked about when they retire.

We all have hardships. There is no fucking misery Olympics. Not one of here gets to claim the gold medal for the most pain! The least we can fucking do is be kind to each other, even the ones that don’t have a diagnosis yet. Even the ones that have health anxiety. Even the ones that are mentally ill. And before you say, “that’s what we’re doing by shutting them done!” NO IT’S NOT. That is not kindness. You know why they come back over and over? Because they’re trying to prove something to these people. If people just shared their personal stories without shutting them down, they’d feel loved and heard and move on.

You can disagree with me all you want. You can mistakenly think you can read my tone through text. You can be hard-headed all you want. But I won’t stop defending and protecting people and I won’t stop being kind to the people coming here for help.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
4,221
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Mod note- I have moved these posts to their own thread as this is off topic from the original DIHALS' question and centres someone other than the original poster. (original thread here)
I would like to remind folk that personal attacks, insults and swearing at other members are a violation of the forum terms of service and will result in a ban.
 
Last edited:

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
2,098
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Get Real
CALS live with their PALS, 24/7, for the most part.

First personal witness to the ravages of this disease.
They often are the administers…food, meds, lifters, transfer,
IT skills, scheduler, investigator, paper work, nurse,..
first hand witness.

Until the end… witness of that too.

The Neurologist may see a PALS a few hours, if that, maybe
once a month or every three months for open clinic.

Yea, CALS know about this disease. And, my opinion, when
it isn’t.

Tippi, “…that are going to have to bury their mother way too soon.”
“I have to live with the fact that my father will now have to bury his
FOURTH adult child, his baby”

Is somewhat over the top at this time,.. my opinion.

Many people with PLS live long lives after diagnosis. All children
eventually lose their mother, their father. I saw my parents pass long
ago…and many others have. It’s the passing of generations. Thinking
you’re going to die soon from PLS is selling time short…and life.
You may never morph to confirmed ALS…

From what I have read so far you are very very early into diagnosis,..
just over year or more. (?) So many diagnosed with PLS have traveled
the 3 to 5 year protocol of testing and observation first. I think that’s
still the protocol.

I realize you are upset with your situation… think of those (us) who
have been diagnosed with ALS.

Maybe take a break from the Forum for a while or participate in
another site for a while too.

Posting on the "Could this be ALS" sub-forum probably won't bring
peace to this situation... for now.

Hope things calm down for you.
 
Last edited:

Bestfriends14

Very helpful member
Forum Supporter
Joined
May 7, 2017
Messages
1,266
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
@TippiLeigh you seem very hurt and angry at others on this forum, but maybe the hurt and anger stems from your recent diagnosis and for that I am sorry. I will say, however, that your name calling and profanity towards members is crossing the line. No one speaks/writes to anyone in the manner, be it a member or CIHALS poster, in the manner that you have to spoken to members here.

You are not an avenging angel nor are you a martyr. The folks that post on the CIHALS sub-forum are not dying and 99% do not have ALS. Acting like they do and that we are doing them some disservice by not handholding their anxiety which, at times, crosses the line into obsession and constant pestering of forum members, is an inaccurate view of what the sub-forum is for.

Finally, to say CALS do not know ALS is a slap, a huge slap, in the face of every CALS who walk this earth. We talk to our PALS, hear about every symptom, every progression, every ache and pain, and are privy to things no neurologist or doctor is privy to. For most CALS and PALS, there is no other relationship and dynamic closer and more connected.

Why am I writing at 3 in the morning you may wonder? Because I don't sleep more than two hours at a stretch. I am constantly up and moving my husband's legs, torso, or arms because he can no longer do that himself. I'm constantly exhausted and taut with stress. When my husband was taking Radicava, who accessed his port, connected his IV, flushed his line, and de-accessed it? It was me. His neurologist and most nurses he sees would have no idea how to do that. You want to see what a CALS does? Go spend a day with one and then tell me they "don't know ALS because they don't have it".

Finally, why are you so bent on protecting those who don't have ALS, rather than those who do have it and their caregivers? Step back and try to see the situation more objectively, if you will. Again, I'm sorry for the hurt and anger you are feeling. Perhaps that hurt and anger is not truly directed at the members, but more at your disease and your diagnosis. If that is the case, that is perfectly normal. I'm mad at ALS all the time. No, I don't have ALS, but I watch my husband get taken by this beast a little bit more each day. I hate ALS, I hate that it showed up at our door when my husband was still just 40, I hate that I won't even get to see 50 with him, and I hate that I am losing my best friend in the whole world. Will that anger cloud my views so that I turn against the very people on this forum who need support the most? No, I won't because the world of ALS is a small one and we need support and each other to lean on as much as we can.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,269
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
First, a reminder to all that there is an option to "ignore" members and/or threads, by holding the cursor over their name and clicking "Ignore."
---
Tippi, as Al notes, it is quite possible to die of something else before PLS, if you have it. We're all dying, as it happens. When, and of what. is not yet written.

Your profane disrespect toward CALS (and, by extension, their PALS) has been detailed by BestFriends, and rmt, far from splitting hairs, precisely identified the contradiction in your stance about mixing and matching symptoms. A clinical diagnosis is much more than a laundry list of symptoms, and many of those stopping by have largely self-reported, not clinical issues. When we fail to distinguish those, we lose the very diagnostic sensitivity that you assert is lacking.

We, i.e. everyone in this thread and more, have to date tolerated your disrespect for one reason: we are here to support P/CALS. And yes, we provide those who don't have either role with the advice they seek, but we punt plenty back to docs as well. If you know someone who did not fare well by following advice posted here, please ask them to post to that effect or PM any of the mods so we can discuss and learn.

I agree that it might help you to ask yourself why and how:

(1) You find yourself at odds with P/CALS here to the point where you feel the need to use language that violates our [and most other health forums'] Terms
(2) You post here if we are on a mission you disagree with and refuse to support
(3) You repeatedly recapitulate your own story without regard to the unique context of the person you are addressing, essentially conducting a monologue rather than a conversation.

Best,
Laurie
 
Status
Not open for further replies.
Top