ALS?

[Jammil73]

Hi,

I am worried that I might have respiratory onset ALS. This all began with a psychotic breakdown several months ago, which I saw purely as a mental health problem. However, a few weeks ago I started to get other symptoms, including difficulty breathing, swallowing problems, weakness/stiffness in legs, twitching all over body (I know with some cases of ALS twitching can be found all over body). I believe that some cases of psychosis can be underpinned by neurological disorders such as ALS and, naturally, I am very concerned. Any advice would be gratefully received.

Thanks,

Jamie

 

[ShiftKicker]

Hi Jamie-

First read here: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms! This covers symptoms that often people worry about being symptoms of ALS. You report a recent health crisis- that kind of stress on a body, along with possible changes/addition of meds, can definitely result in odd symptoms. Regardless, your first stop is with a doctor to go through your symptoms and get a clinical exam.

 

[lgelb]

I have heard of no acute psychotic breaks attributable to undiagnosed ALS. As you have read, it is much more likely that the stress of your mental health crisis and/or medication side effects has also manifested physically. See your primary care doc for a baseline, and you should report your symptoms to whoever is writing your meds, but we will see no reason for worry about ALS.

Best,
Laurie

 

[Jammil73]

Hi Jamie-

First read here: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms! This covers symptoms that often people worry about being symptoms of ALS. You report a recent health crisis- that kind of stress on a body, along with possible changes/addition of meds, can definitely result in odd symptoms. Regardless, your first stop is with a doctor to go through your symptoms and get a clinical exam.

Many thanks for your response. Yes, you are undoubtedly correct. I have been referred to a neurologist for further examination, so hopefully the picture will become clearer.

 

[Jammil73]

I have heard of no acute psychotic breaks attributable to undiagnosed ALS. As you have read, it is much more likely that the stress of your mental health crisis and/or medication side effects has also manifested physically. See your primary care doc for a baseline, and you should report your symptoms to whoever is writing your meds, but we will see no reason for worry about ALS.

Best,
Laurie

Hi Laurie,

Thank you for your feedback. There is good quality research linking ALS with psychosis, but it is interesting to know that you have not come across any such cases. Given your experience, it does suggest that this link is not commonplace. It is certainly true that stress is a factor. I have been on antipsychotic medication for several months although I am on a very low dose now (tapering off) and the symptoms I have described seem to be getting worse. I'll see what the neurologist has to say and thank you very much for your informed opinion.

Jamie

 

[Nikki J]

People who carry the c9orf72 FALS mutation may have psychosis and or schizophrenia as a manifestation it is true. As far as a psychotic episode being a presentation of early ALS I have never heard or read of it. FTD may precede ALS in either FALS or SALS but this isn’t you either. Please cite this research to which you refer

 

[Jammil73]

Psychiatric disorders prior to amyotrophic lateral sclerosis This article makes the generic point although it does focus on FTD.

The specific link between ALS and psychotic breaks probably does require further research to be fair.

Jamie

 

[KimT]

If you are tapering off and your symptoms are getting worse, perhaps you should schedule an appointment with your psychiatrist.

 

[Jammil73]

Hi Kim,

Strangely, it is not the psychotic symptoms that are manifesting, but these worrying physical ones. The Psychiatrist simply suggests that the tablets could not be responsible and that there must be some underlying condition. All very frustrating but I suppose time (and further examinations) will tell.

Thanks for your message,
Jamie

 

[Nikki J]

The study as you note talks about misdiagnosed FTD and c9. In the UK rates of c9 are higher than elsewhere. It would be interesting to see this analysis in a population with little c9 such as Asia.

How old are you? Does your family have many cases of neurodegenerative diseases? Regardless it doesn’t sound like MND to me. Many of the psych meds do have a side effect of twitching

 

[Jammil73]

Yes, indeed, Nikki. I am 45 and there is no history of neurodegenerative disease in my family, but the symptoms are concerning. You are correct regarding the antipsychotic meds (Respiridone in this case): the side effects are pretty terrible and do cover just about everything that I am experiencing. It just seems odd to me that the symptoms appeared three months into the course. Obviously, I would prefer it if the tablets were responsible.

 

[lgelb]

It is not unusual for antipsychotic meds' side effects to worsen well into the course, much later than 3 mo. Indeed, that is why there is so much switching among meds, even among longstanding users. As a matter of safety, I would ask that atypical malignant neuroleptic syndrome be ruled out, and make sure of your hydration meanwhile.

FTD is not an acute psychosis. The paper does not connect acute psychosis with ALS. So I don't know why you would make that connection, but the really good news is, you're in the wrong place.

 

[Jammil73]

It is not unusual for antipsychotic meds' side effects to worsen well into the course, much later than 3 mo. Indeed, that is why there is so much switching among meds, even among longstanding users. As a matter of safety, I would ask that atypical malignant neuroleptic syndrome be ruled out, and make sure of your hydration meanwhile.

FTD is not an acute psychosis. The paper does not connect acute psychosis with ALS. So I don't know why you would make that connection, but the really good news is, you're in the wrong place.

Thanks Laurie. My initial concerns were sparked by this story
My symptoms are strikingly similar, but hopefully you will be right. Thanks, Jamie

 

[Bestfriends14]

The wonderful thing is is that your symptoms are not indicative of ALS. Period. Psychopharmaceuticals can create havoc on your body and create the symptoms you are describing. I have yet to hear of ALS creating those similar types of symptoms. That is such great news that you do not need to be here.

Best of luck to you and take good care.

 

[Jammil73]

The wonderful thing is is that your symptoms are not indicative of ALS. Period. Psychopharmaceuticals can create havoc on your body and create the symptoms you are describing. I have yet to hear of ALS creating those similar types of symptoms. That is such great news that you do not need to be here.

Best of luck to you and take good care.

Many thanks to you. Yes, it is possible that the Respiridone could be the culprit (even on a very low dose) and it is clear that everyone here agrees that my symptoms do not sound like ALS. I will therefore thank you all for your kind help and hope that what I have can be properly identified and, in an ideal world, eradicated.