Worried that lymes caused my als

Status
Not open for further replies.

PhoenixShaham

New member
Joined
Dec 17, 2021
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
TX
City
Houston
Hello everyone. I have moved to college in Boston. I am going to be seen by the chief of Neuroimmunology at Mass General soon. My EMG was not clean and my FVC dropped. My genetic testing panel for 22 ALS genes came back negative which gave me lots of relief. My body has been getting really stiff and my fasciculations have been increasing. I also still have progressive swallowing issues. But in regards to that my neuromuscular does not suspect ALS but rather a neurotoxin due to atypical signs. I hope to find answers soon and I am definitely in the right place. This will be my final question in this forum as I will be having a lot of appointments soon.

I do have a very simple question that's been on my mind. I remember 5 days before the onset of my symptoms I would exercise very intensely and just drink 2 smoothies a day to lose weight. I was just wondering if the oxidative stress(from the exercising/fasting) plus whatever virus I was having triggered ALS. I heard that intense physical activity can cause ALS if you are genetically predisposed. I also read this article and was kind of scared.

I always get worried that me working out intensely those 5 days triggered ALS and I keep blaming myself. I've heard that lots of PALS get symptoms after a stressful period. So to reiterate I'm asking if it is possible that the oxidative stress from intense exercise plus the virus/neurotoxin triggered ALS?
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
11,731
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
A few thoughts. Mgh will figure this out.

there is no evidence that lyme causes ALS. The lyme = als is a common scam. It can cause some neurologic symptoms

a case study is just that and correlation is not causation.

the whole exercise and genetic ALS is very tenuous. The researchers of the paper on c9 and exercise backtracked considerably when asked by the c9 community for recommendations but anyway it was exercise patterns over years not 5 days and you apparently do not have c9 anyway. They did not even recommend documented carriers change exercise patterns

emgs can be abnormal in many ways and for many reasons. What did yours show?Apparently your prious doctor was a neuromuscular specialist and felt your clinical picture did not add up to ALS. The fact you have been referred to neurimmunology seems to support that. If ALS was suspected you would be going to the ALS clinic.do let us know what happens

eta I missed seeing the first page and thought your last post was the first you had made. Echo Laurie’s comment below
 
Last edited:

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,180
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Again, ALS plays no role in your history, and if your EMG only showed acute denervation, all the more so since both acute and chronic denervation are necessary (though not sufficient) for the diagnosis. Nor have you described it.

The answer to your question is no.

I am sure MGH can help find an answer, but it will not be ALS.

Feel free to stop by (only) when you have a diagnosis to close the loop, but until then, it's not healthy for you to be here.
 
Status
Not open for further replies.
Top