COVID Vaccine

McCamy

New member
Joined
Feb 14, 2021
Messages
2
Reason
PALS
Diagnosis
02/2021
Country
US
State
TX
City
Fort Worth
Vaccine side effects cannot be worse than the disease. I caught Covid early December. I survived (obviously) but since then my symptoms are so much worse. Before Covid I mainly had bulbar with dysarthria speech, some trouble swallowing with aspiration liquids only (speech therapist showed me how to hold my breath when swallowing liquids which brings the vocal cords together). I was doing half mile walks for exercise using a staff due to some minor balance problems, stairs were no problem and I had no symptoms in my arms at all. Also normal EMG in May and then October 2020. After Covid my speech is unintelligible I have profound weakness in both arms and legs (basically all over) and I got new EMGs 2/21 which showed evidence motor neuron disease in lumbar/cervical/thoracic meaning my ALS is now everywhere. Plus the Covid brain fog on top of the motor symptoms.

Has anyone else experienced Covid with rapid deterioration in function? I keep hoping this is Covid Long Haul superimposed on early ALS but the new abnormal EMGs have me worried that Covid can damage the anterior horn cells (the way that polio and other enteroviruses can).

Also on a related note, every incremental decrease in function which I have experienced over the last year has come during a viral infection. Influenza twice, meta pneumonia virus, shingles. These are all viral infections known to affect the nervous system. Has anyone else experienced permanent worsening of ALS symptoms from viral infections?
 

Jay Q

Member
Joined
Aug 11, 2018
Messages
20
Reason
PALS
Diagnosis
08/2016
Country
US
State
LA
City
Metairie
McCamy, thankfully I haven't had Covid, however since I had a supra pubic catheter put in in summer 2019, I have been hospitalized three times with UTIs. Each time there has followed some accelerated loss of function. I didn't have bulbar onset. My losses have been in loss of strength and functionality in limbs.

Wishing you the best in your recovery.

On an unrelated note, yesterday I complimented Walgreens in their vaccine administration. Later yesterday my local paper reported that Walgreens was canceling first and second dose appointments with no guidance on how to reschedule. Thankfully I got my second dose the day before the cancelations began. One issue I noticed is that the appointment process is totally made online. When you call the actual pharmacy for information, the staff has no real substantive information to help those with appointments react to cancelations. Defect in their process if you ask me.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,850
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I hope more of you have been able to access the vaccine. After complaining about MA not prioritizing PALS ( they still don’t) the final comorbidity list allowed me to get vaccinated for 2 conditions that I consider minor. Anyway I was lucky enough to get moderna.
it looks like there will be more vaccine available by the end of March - about 145 million doses of M and P and 20 million of J&J if they get approved. Astra Zeneca will probably ask for approval in April. I am hoping this will allow most who want one to get a vaccine.

Here is MA the VA has had several walk in vaccine clinics for their patients ( you do have to be a VA patient). The last one was for 50 and over. Vets from other states were allowed and in at least one case they vaccinated the accompanying non vet spouse. Don’t know if other VAs are doing this I think it happens when they have extra vaccine as they are announced last minute
 

lisa g

Distinguished member
Forum Supporter
Joined
Apr 17, 2019
Messages
296
Reason
DX UMND/PLS
Diagnosis
04/2019
Country
US
State
FL
City
FORT PIERCE
I will say I am alittle concerned with the side effects of the vaccine. I had my first dose on 1/29. All went well with only minor tenderness at the injection sight. That lasted 24 hours. I drank an abundance of water which I was told would help if I felt a headache. All was well, then 10 days later the injection sight turned red and swelled. It became hot to the touch, within a couple of hours welts appeared at the sight and became very itchy. I became alarmed and called the pharmacist. He had not received any reports from individuals. He said if it didn't go away to call my PCP and have it checked out.

Kim had found an article and posted it on the forum. This reaction is called Covid Arm. It happens with the Moderna vaccine. It's a rare allergic reaction to the skin that appears days after the vaccine. It's not harmful they just say to take the 2nd dose in the other arm. I will receive my 2nd dose on Friday.

One thing I am concerned about is since the vaccine I'm feeling a heaviness in my limbs and neck. Not a weakness just a heavy feeling. I'm not sure if this is connected to the vaccine or just coincidental. I just know I don't feel right but that won't stop me from getting my second dose. I hope everyone finds it easier in the next couple of weeks to get vaccinated.
 

EricInLA

Distinguished member
Forum Supporter
Joined
Oct 20, 2019
Messages
146
Reason
PALS
Diagnosis
01/2020
Country
US
State
CA
City
Los Angeles
Interesting - thanks for pointing that out Lisa - hope you feel better.

My wife got the Pfizer vaccine on Monday - she qualified because she is an educator. She said her arm was really sore and uncomfortable. She also had stomach issues which may/may not be related.

I don't qualify for the vaccine right now. ALS doesn't do a damn thing for me here, and technically it wont help even when they open it up to people with underlying conditions! California has a list of 7 or 8 categories - stuff like cancer, heart conditions, kidney and lung problems, obesity, etc.. that will make you eligible starting March 15th. But not neuromuscular disease. It seems everyone in my part of town is getting the vaccine whether they are qualified or not. There was an article in the LA Times today about that, and more broadly how the wealthier parts of town have much, much higher percentages of people who have received the vaccine, as opposed to minority and poorer areas where they have a greater need, based on much higher incidences of Covid-19 infections. Those folks are just not getting the vaccine (for various reasons), which isn't right. Anyway I'm trying to follow the rules, but I may use those skills that they taught me in law school to argue that ALS fits into one of those categories. As Karen once told me in the context of insurance, "ALS is one helluva pre-existing condition!"
 

lisa g

Distinguished member
Forum Supporter
Joined
Apr 17, 2019
Messages
296
Reason
DX UMND/PLS
Diagnosis
04/2019
Country
US
State
FL
City
FORT PIERCE
Eric sorry to hear about your wife's side effects but glad she was able to get the vaccine.

As far as you getting the vaccine you have to wage your own war. I wasn't of age to receive the vaccine but it was aggravating me that you had perfectly healthy 65 year olds that golf or play tennis everyday were able to get the vaccine while us being terminal or others with life threatening circumstances were being pushed behind. I had my neurologist draw up a letter stating my diagnosis and much my respiratory would be further compromised if I were to contract covid. From that they made an accept I on and vaccinated me.

I am currently fighting with my insurance company to get Sodium Phenylbutyrate covered. I find I'm lacking the patience to deal with people that don't understand the depth of this disease and their ignorance to let me have the right to try something that has shown to be effective. It's a good thing they're on the other end of the phone line otherwise I still have good arm strength and would be ringing their necks 😡 I think this disease is producing a mean streak in me.
 

lisa g

Distinguished member
Forum Supporter
Joined
Apr 17, 2019
Messages
296
Reason
DX UMND/PLS
Diagnosis
04/2019
Country
US
State
FL
City
FORT PIERCE
Sorry I hate spell check that puts words in other than ones you wrote.
 

lisa g

Distinguished member
Forum Supporter
Joined
Apr 17, 2019
Messages
296
Reason
DX UMND/PLS
Diagnosis
04/2019
Country
US
State
FL
City
FORT PIERCE
I will be contacting my neuros office this afternoon. Specialty pharmacy called me to tell me the appeals was denied.
 

Bestfriends14

Very helpful member
Forum Supporter
Joined
May 7, 2017
Messages
1,045
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
EricinLA, we are in Palm Desert and I've been told that my PALS will be under the umbrella of conditions covered for the vaccine. It is up to the person administering the shot to make the judgement call as to whether you qualify. ALS would fit the criteria from what I understand.

Good luck to you and I'll keep my fingers crossed for you getting your jab soon.
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,079
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
I'm so disgusted with Florida's handling of the vaccines. I have to go to the hospital tomorrow for a minor procedure but I haven't had my first vaccine. I'll be wearing an N95 mask through the procedure but it requires me to be there for at least six hours.

Our Governor set up "vaccination centers" in areas of rich developments, one of which has a connection to him. When questioned, he growled at reporters and said if they didn't like it that was too bad. He is also one of the conspiracy theorists that perpetuates the stealing of the election. I have neither the time nor energy to listen to him on TV or read his BS in the newspaper.

I've been spending some time doing pro bono tax work and Medicare plan selection for some low income people and elderly people I know. Recently, I had to get someone out of his reverse mortgage because it was a big scam and wasn't proper for his income or his situation.
 
Top