Another newly diagnosed

KevinM

Active member
Joined
Mar 30, 2019
Messages
55
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
A few thoughts. A significant illness especially with weight loss will exacerbate symptoms. I had been very ill ( pneumonia) before my last clinic. Although my breathing was fine and I was recovered they felt some of the strength changes could be atrributed to that and might reverse a little. I can’t tell for sure but I wouldn’t be surprised if my next visit looks like a plateau (improvement from recovery balanced with progression from disease)

The first summer I had this things seemed to be progressing alarmingly and I expected a wheelchair by Thanksgiving. That changed after starting riluzole and the wheelchair has yet to be recommended or requested by me.

Riluzole also knocked out twitches for quite a long time. This happens for some PALS. I do twitch now but not badly.

It takes a couple of weeks usually to get over the shock but as you can see her many PALS live pretty full lives. The world doesn’t stop with a diagnosis nor should you

If your previous emg was not diagnostic I am really surprised Dr Pulley made a diagnosis without another one. My clinic is extremely strict about meeting the criteria from what I have been told
This is very helpful info, Nikki. Thanks so much.

All I can say re: Dr. Pulley’s diagnosis is that after strength and reflex testing, and comparing it to the first visit, was that I am now in the clinically probable category, and that he felt strongly that I had ALS. He started me on rilozule, set up a clinic visit in two months, and gave the letter saying I had ALS for social security. After the last EMG and the pain from the hematoma, I certainly didn’t push him for another one.
 

KevinM

Active member
Joined
Mar 30, 2019
Messages
55
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
I must add that my wife and have a feeling of being “set adrift” after the diagnosis. I have seen this comment from others that are newly diagnosed, and I completely get it now. At the Shands Clinic, after the diagnosis, I left with a bottle of rilozule, an endless refill of Ativan, a folder with general info I had already compiled, a scheduled clinic visit in July and a feel good booklet about caring for someone with ALS. And then, “good luck Kevin and Nori. Hopefully we will see you in a couple of months at clinic” (to check on your decay).

This is so much a personal family disease, and although there’s great info here and elsewhere about getting legal/financial/insurance affairs in order, anticipatory planning, etc., there is the pervasive feeling of “you’re basically on your own, pal (pun intended).” We’ve reached out to our ALSA regional manager, and she is incredibly caring, but we don’t have a chapter here in Tallahassee and there is only so much someone in another city can provide.

We have our PCP and I am getting a referral to a local pulmonologist, but like the local neurologist, they are woefully ignorant of the specifics and supportive treatments for the disease. It simply is unlike virtually any other disease I can conjure. Go home, don’t fall, conserve energy, eat a lot, try to load up on assistive devices before the real need arises, and find someone that has the strength, stamina, love, and forgiveness to put their life entirely on hold. Then wake up the next day and prepare anew for whatever changes are happening.

Sorry for the mini-rant. I’m sure these emotions have been shared by many PALS here, especially those that live away from large clinics. And I’m still in awe of PALS and their families facing this horror with limited financial resources. We own our home and have enough from investments and retirement funds to last us for a while at least I can’t imagine the financial stress on younger families or those with limited savings. I hurt for everyone in that situation. Kevin
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,358
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
Go home, don’t fall, conserve energy, eat a lot, try to load up on assistive devices before the real need arises, and find someone that has the strength, stamina, love, and forgiveness to put their life entirely on hold. Then wake up the next day and prepare anew for whatever changes are happening.
That’s as good a summary as I’ve heard. Take some solace in knowing that the losses in ALS don’t all come at once, so there is some time to prepare. It’s good to anticipate and stay ahead of the curve, but it’s way different than say a spinal cord injury where someone loses it all at once.

Also, I think you can still walk, talk, eat, breathe, and use your hands, right? So now’s the time to travel, get out, and have some fun!
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,583
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
The 1-2 month initial follow up is pretty usual. They want you to have some time to process.

Karen is right. Now is the time to start planning for some fun activities. Especially travel. While travel is certainly possible later the sooner the better. If you have ever said someday I would like to...that day is here
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,351
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Kevin,

I'm so sorry your diagnosis was confirmed. Don't buy into the fast progression and I'll tell you why. My strength tests change depending on my stress level, the time of day, the amount of fatigue I feel coming into the exam. The very first time Mayo strength tested me they said I was a five in every area. My EMG was their main concern. Three months later I was 4 in my left thumb, my hip, and my ankle. Three months after that I was back to 4+ in my hip. All done by the same doctor. Another big plus is that you are limb onset.

Have you had a pulmonary function test for a baseline. Again, this test can vary widely depending on your stress level, your fatigue level (I do much better before eating anything), and the person doing the test. The most comprehensive test is at Mayo and the second would be Florida Hospital (I think they changed name to Advent Hospital.) Shands doesn't test respiratory muscle strength which, IMO, is one of the most important tests.

Nobody can predict your progression. I think my local neurologist caught mine well before I would even think anything was wrong. In 2012 I stood up and my left ankle turned and sprained for no reason. It healed and I started running again but not as fast and not as far. Then in 2013 I fell and got a TBI. The following Summer (2014) I got cramps in my left foot and fasciculations in that foot and calf. I went back to my local neuro because my neck was bothering me (prior car accident) and he was brisk reflexes. He did a quick EMG and said I should to to Mayo. I put it off for six months until I felt like I had to stop running and start walking.

The whole next YEAR I had little, if any, progression. By then I was diagnosed and had my first fall. They said I'd never walk again so I ordered my PWC. But it was my "good" leg that was insured and I DID walk again. I do have significant atrophy in my "good" leg from six months of inactivity and it did speed up progression......but I'm still walking. I eat like a horse and have gained the amount of weight Mayo suggested.

I have one regret and that is that I didn't retire the day I was diagnosed. I should have traveled when I could still walk several miles a day.
 

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
628
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
Sorry to hear of your diagnosis, but welcome. Definitely try and take this time to go out and do things that you enjoy or have always wanted to do. Make memories. :) We are here for you when you need support.
 

ChristineRK

Active member
Joined
Jun 6, 2019
Messages
48
Reason
PALS
Diagnosis
08/2015
Country
US
State
OH
I welcome you to our group, Kevin. I wish I didn't have to - but I have found these people to be some of the strongest, most positive and helpful people I have come across. You have come to the right place.

I agree with the eating/gaining weight. I rapidly lost 40 pounds due to this disease and was quite the hot mess. My ankles couldn't hold me up, I couldn't drink a cup of tea without my hand shaking, etc. Once I got my feeding tube and was able to gain some weight - my symptoms seemed to get a little better.

Again, as was said previously - don't let this define you. It WILL take some time to get over the initial shock of it all - I am still in denial and shock sometimes and it has been awhile. So live life like you mean it and love like you mean it.

Again - an unfortunate welcome - but these are the most amazing people ever!

~Christine
 

Par220

Active member
Joined
Dec 23, 2015
Messages
38
Reason
PALS
Diagnosis
07/2011
Country
US
State
CA
I'm very sorry to hear. I quickly researched promising studies and enrolled in one very quickly. In addition to researching and considering options I think it's good to see what activism is being done and consider getting involved. I was diagnosed in 2011 and my biggest issue for those of us living with the disease now is how slow the drug approval process is despite no effective treatments available for ALS. I recommend you look at a Facebook group for ALS patients called 'No More Excuses' whose sole purpose is to get access to promising drug treatments currently in development to ALS patients. They are not a fundraising group. Please take a look.
 

Lkaibel

Forum Supporter
Very helpful member
Joined
May 9, 2016
Messages
1,284
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
If it helps a tiny bit, my husband looked like a fast progression initially but as it turned out that slowed considerably. He walked for over a year, and drove, and we did a lot of things.

I’m so sorry this happened to you. I hope you can embrace the present moment.
 

KevinM

Active member
Joined
Mar 30, 2019
Messages
55
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
If it helps a tiny bit, my husband looked like a fast progression initially but as it turned out that slowed considerably. He walked for over a year, and drove, and we did a lot of things.

I’m so sorry this happened to you. I hope you can embrace the present moment.
So good to hear from you, Lenore. I have been keeping up with your story since your husband passed, and I have all the respect in the world for you and your strength as you navigate your re-entry into life without ALS.

Since my first post after the diagnosis, I do seem to have leveled out quite a bit. So much was related to stress, but I’ve now gained back the 10 lbs I lost, and still have full functionality. In fact, I feel stronger now than last month. My wife, daughter and I are flying out to Northern California at the end of the month to revisit some of our favorite places. Money be damned....now is the time. We are indeed trying to embrace the moment, but I was a planner by education and living for the moment does not come naturally. Take care of yourself (and keep cooking)! Kevin
 

KenM

Member
Joined
Jun 21, 2019
Messages
19
Reason
PALS
Diagnosis
03/2018
Country
US
State
NC
Very sorry you got this diagnosis Kevin. I hope the forum will be a place where you can find useful advice and support.
 

Lkaibel

Forum Supporter
Very helpful member
Joined
May 9, 2016
Messages
1,284
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
Kevin, love that you are traveling and what you say about gaining weight back is very promising. My late husband also made some small recoveries along the way, which is rare in ALS indeed.

Thank you so much for your kind words.
 

KevinM

Active member
Joined
Mar 30, 2019
Messages
55
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
Very sorry you got this diagnosis Kevin. I hope the forum will be a place where you can find useful advice and support.
As with you, Ken. I, too would like to become more engaged in conversations on this wonderful forum. Here’s to continued slow progression for you and hopefully the same for me.
 

KevinM

Active member
Joined
Mar 30, 2019
Messages
55
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
Kevin, love that you are traveling and what you say about gaining weight back is very promising. My late husband also made some small recoveries along the way, which is rare in ALS indeed.

Thank you so much for your kind words.
Keep going, Lenore. You’re moving in the right direction. K
 

lisa g

Active member
Joined
Apr 17, 2019
Messages
67
Reason
PALS
Diagnosis
04/2019
Country
US
State
Florida
Kevin
Great to hear that you put back 10 lbs. Now, the trick is to maintain it. I also have gained 10 lbs back on. To make sure that I keep it on I've increased my calorie intake to between 2,000-2,300 a day making sure I get enough protein in there. For my frame being small boned and 4'11" I should take in 1600 calories a day. You and I, I think are at the same point of symptoms. There are days when I feel so good no symptoms that I have to remind myself that I'm sick. I feel quilty that I'm still able to do everything while I know others have lost the ability. I know eventually my time will come and I won't be lucky enough to be in the same situation.

Enjoy what you can do now. That's great that you and your family are going to get away. My husband and I have booked a cruise for March to go to the Panama Canal and if I'm using a walker by then or in a wheelchair so be it! I plan to do what I can for as long as I can we can't ask for much more.
 
Top