Diagnosed Tuesday

Status
Not open for further replies.

kerivoo

Member
Joined
Sep 29, 2021
Messages
15
Reason
PALS
Diagnosis
9/2021
Country
US
State
IN
I was diagnosed Tuesday morning. I spent much of the day with my husband and I in tears. Since then, I have been filtering through being sad, angry, lost, and like it isn't real. It was highly suggested to join a support group, so here I am. I have never been in a support group before, so I don't really know what to do.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
15,867
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
So sorry to welcome you here - none of us want to be here, yet it is the best place too.
Definitely the shock of the diagnosis is huge, but I promise that it will subside a little and you will find ways together to deal with this and move through together. I hope you can be kind to yourselves and each other, the shock is worst in the first month or two.

I had never been involved in anything like this either, we work it out together.
There are a huge number of resources here, but don't feel like you have to go through any of them until you are ready.
Ask questions, especially specific things so we can help as you need.

May I ask what parts of your body are affected most, as that can help us a little. My husband was bulbar onset, so his issues started with his speech and swallowing, but if you are leg onset, we would be talking about other needs first.
 

Mary2

Distinguished member
Joined
May 1, 2021
Messages
473
Reason
CALS
Diagnosis
04/2021
Country
US
State
GA
So sorry about your diagnosis and to have to welcome you here. This is a very helpful forum both for support and information about equipment, diet, and so forth. My PALS experienced limb onset and progressed from a cane through the various pieces of equipment to help with mobility. We find joy in each other's company and in reading, audio books and sports games.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
12,690
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
I am very sorry. We will support you however we can. As to what to do here, we try to support practical needs and questions as well as all the feelings you have had and will have. So ask any questions and feel free to chime in as well. The search link up top with the magnifying glass icon is a way to find posts on topics that you want to learn more about, but you can always just ask, too.

There is no ALS diagnosis that does not begin in tears. Just to be sure, we always advise a second opinion if you have not yet had one yet?

Best,
Laurie
 

kerivoo

Member
Joined
Sep 29, 2021
Messages
15
Reason
PALS
Diagnosis
9/2021
Country
US
State
IN
Thank you for your thoughtful words, they're appreciated.

November of last year I noticed that my right leg felt a bit heavy when I was walking, and had muscle twitches when it was resting. It's now progressed to; both legs feeling heavy, both legs having muscle weakness, weakness in my arms (not as bad as my legs though), muscle twitches from just below my rib-cage to my toes (when I'm not using them), muscle twitches in my tongue (had never even heard that something like that was possible-freaked me out), clumsiness in my hands (can't untie my shoes & bought slip-ons), unsteady and unbalanced gait (fallen 5 times since April and stumble A LOT), difficulty swallowing.

I went to see a neurologist when I noticed after the first couple weeks that the twitches weren't stopping, in Dec. He told me it was restless leg syndrome and put me on gabapentin. After a month, the twitches and heaviness were getting worse and his solution was to increase meds and he told me that it would 'get worse before it gets better'. My husband was upset and wanted me to get a second opinion from another neurologist. In January I went to see another neurologist, she ran a slew of tests, EMG abnormal, blood tests for hormones & diabetes & several vitamins normal, Evoked Potential normal, and told me I didn't have restless leg syndrome but a 'disconnect' between my brain and my vision (perception). When I asked her what the actual diagnosis was, she was extremely rude (asked me if I only wanted it so I could post it on social media, then complain all day), needless to say I never went back to her. But I did go back to my previous neurologist in August and he did more blood tests to rule out MG, Parkinson's, and myopathies, after he saw me in his office.

After everything came back negative, he told me he was leaning towards fibromyalgia. I told him I wasn't in pain, I just wanted help in getting my muscles to stop twitching so I could sleep and find what was causing the muscle weakness. He put me on Lyrica (found out after breaking out with hives that I am allergic to it) and then he put me on Flexeril (didn't help). My husband was more upset at him than I was at this point and asked me to try another neurologist. I told him that I would give it one more go, then I was done. So in Sept I went to see the new neurologist and he was really attentive and listened to my descriptions of what was going on, asked me a series of questions, and said he wanted to repeat the EMG because he didn't believe it was performed correctly before. So I had that done again. He called me the next day and said he wanted me to come in. I miss understood him and thought he was going to do more testing, so I told my husband he didn't have to go & I'd let him know what the test was & how it went afterwards. Nope, it was the results of the tests he wanted to go over. He said I have extensive muscle damage, explained what a motor-neuron disease was to me, and told me that I have ALS. He said that he encourages every patient with that diagnosis to get a second opinion and here we are.

Sorry it's a bit long and you didn't ask for this much explanation.
 
Last edited by a moderator:

Clearwater AL

Extremely helpful member
Forum Supporter
Joined
Aug 28, 2013
Messages
2,611
Reason
PALS
Diagnosis
12/2018
Country
US
State
NC
City
Get Real
I hope this Forum will be helpful for you.
 

Mary2

Distinguished member
Joined
May 1, 2021
Messages
473
Reason
CALS
Diagnosis
04/2021
Country
US
State
GA
I appreciated reading your explanation very much. ALS can be difficult to diagnose. My PALS was diagnosed with back issues and underwent a laminectomy, then he was diagnosed with peripheral neuropathy and finally ALS. Never the less, it is nerve wracking, exhausting and time consuming to have gone through all you went through. I am so sorry. At first, the diagnosis is a shock, for me it was like living in a dream that PALS had ALS, but the human spirit prevails and with courage we have found a way to move forward.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
15,867
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Thanks so much for more detail than you had to give, but sometimes once you start the story it tumbles out and it can be good to have put it in order. You will find that no matter how different each of us are here, you will be very much understood.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
14,821
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I am sorry you had to find us but glad to meet you. Is your neuro arranging the second opinion? Make sure it is an ALS specialist at a university level medical center clinic.

of course you are in shock now but there is life after diagnosis. When you go for your second opinion you might want to ask about clinical trials if you are interested. You may qualify for one and there are a couple that look promising
 

rnewton60

Active member
Joined
Mar 1, 2021
Messages
40
Reason
PALS
Diagnosis
11/2019
Country
US
State
CA
City
Fremont
I am sorry to hear about this diagnosis. I was diagnosed with Bulbar Onset ALS on 11/01/19. You mentioned in an other post you were having difficulty in swallowing so this advice is probably still good for you. Voice bank as soon as possible. I did not and before I knew I could not longer speak. To be able to speak with a device in your own voice is something I really regret not doing.
 

Greerguy

Member
Joined
Mar 8, 2020
Messages
13
Reason
CALS
Diagnosis
01/2020
Country
US
State
SC
City
Greenville
I am sorry you have to be here. Your diagnosis sounds similar to my wife's.
We had a good experience with a clinical trial even though it didn't help her. Their are so many trials going on.. One day there will be a treatment .
 

em9988

Active member
Joined
Jun 19, 2021
Messages
30
Reason
CALS
Diagnosis
06/2021
Country
US
why does it seem like its so common for ALS to take so long to diagnose, same happened to my mom. We had the run around with multiple neurologist for over half a year.
 

Clearwater AL

Extremely helpful member
Forum Supporter
Joined
Aug 28, 2013
Messages
2,611
Reason
PALS
Diagnosis
12/2018
Country
US
State
NC
City
Get Real
Em, because ALS is still considered a rare disease. There are many neurological diseases in the
early stages that have mimic symptoms that must be excluded first.. No Neurologist should be
eager to tell someone they have a terminal disease with no cure. Well... there are someone
Neurologists who are not ALS specialist who do. That's the sound reason for a second opinion.
One should not be in a hurry or anxious to get a confirmed diagnosis of terminal ALS.
Not saying you were.

I'm sorry your Mom was finally diagnosed. During that half year there was some hope it was
a treatable MND instead.

I'd say those multiple neurologists were concerned but something had them still looking.

Finally, many have been confirmed from a positive EMG in the early onset. And a second
opinion and EMG. Again, It's the EMG in most early cases that eliminates the doubt.
 
Last edited:

affected

Guru status reached
Joined
Apr 26, 2013
Messages
15,867
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
em I think that it can take also time, because the early symptoms can be so different from one PALS to the next, and don't really scream 'rare terminal illness'.
For example, if we had gone to a doctor at the beginning and said that my husband kept laughing hysterically (EL) and would have to leave the room, and would occasionally grab a bottle of water in a rush at work, slug it down, and his throat would close and he would spray it everywhere... what GP would have jumped straight to ALS? As it was, we didn't go to a doctor until many months later when the slurred speech was becoming too noticeable to ignore, even though we hadn't connected other symptoms to the speech.
Another person in our same small town was diagnosed at a similar time, but her first symptom was her toes curling. She did not go to a doctor straight away either.
For both of them, those early things could have turned out to be hundreds of other things, that were not terminal, and certainly our GP had never seen ALS before, neither had our ENT, nor the dentist and facio-maxilliary specialist (we had lots of mouth investigations at the start).
It's complicated, as they say.
 

kerivoo

Member
Joined
Sep 29, 2021
Messages
15
Reason
PALS
Diagnosis
9/2021
Country
US
State
IN
Thank you all for the overwhelming supportive responses. Being new to the forum, I can only post every couple days. It's been a whole week today, and the best I'm doing is emotionally detaching myself from it, and treating it as if it's happening to someone else. The 1st EMG in (Jan-2021) showed positive muscle damage in my rt leg & arm (was only done on the right side of my body), the 2nd EMG (Aug-2021) came back as negative for muscle damage (was only done on left leg-calf, and left arm bicep), the 3rd EMG (Sept-2021) came back positive for extensive muscle damage in 'multiple' areas. Neuro doc said that the first 2 EMGs were not performed properly, and something about upper & lower motor neuron something. I remember he said it's 'limb' onset, because it started in right leg and has spread, which he said is common and expected.

Current neurologist did set up the 2nd opinion appt, it's at a certified ALS center in my area so at least I won't have to drive far. We go see that one next Tuesday and I don't know what to expect at that appointment. Am I going to have to have all the dozens of tests repeated again? Is the doc going to do one of those "well I think it could be this instead" and send me through a rabbit hole just to end up back here with this diagnosis??

For the voicebank thing, my husband suggested that I do that but I don't know how to get that started, where to look, etc so any info would be appreciated. Actually any info on any of this would be appreciated. We had a family dinner on Sunday and told our kids, parents, and our siblings. We asked them to keep it off social media and so far they have respected our wishes for privacy while we get ourselves sorted out. Were any of you still working when you were diagnosed? If so, how long did you wait to say anything?? Thanks for all the feedback everyone, I really am grateful for it.
 
Status
Not open for further replies.
Top