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Sidney

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Jan 9, 2016
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98
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Learn about ALS
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00/0000
Country
UK
State
LO
City
London
My latest symptom allied to everything else is abdominal pain after eating. Stomach gets bloated and hard ,making sleeping difficult. Since all this started I've had reflux but this is new and pretty painful.


I've read that als slows down digestion and can cause this.I'm back to the Neuro in May but in the meantime could anyone please tell me if this is an early als symptom or occurs later in the disease?

I'm 2 and a half years in with symptoms but no real diagnosis. Lower leg fasics,pes cavus,curling toes and respiratory problems including apnoea-none of which I had before.I do not have any clinical weakness .

Many thanks in advance .

Sid.
 
No weakness in 2 years, no ALS.
 
Er thank you. I’d be grateful for the opinion of one of the more established members who I’ve previously conversed with if possible he says politely
 
No weakness in two years, no ALS.
 
Also forgot to add I have had two Emg's that show denervation in the form of psw and fibrillations in lower legs.Does anyone have a view on the abdominal problems please?
 
Ive reviewed your posting history here. 95 posts in two years, no evidence of muscle function failure, no evidence of EMG showing acute and chronic denervation.

Sidney, you don’t have ALS. We have told you that many times. Your neurologist told you that repeatedly. Yet you keep coming back and asking us. We are not going to give you different answers.

Furthermore, your gut symptoms are completely incompatible with ALS.
 
Hi and thanks but is +2 fibs and psw in lower legs not denervation?Neuro told me it was
 
Sidney, go get a new hobby and stop writing about your non-ALS symptoms to terminally ill people. It's cruel and I don't understand what you get from doing it, but it's time stop.
 
Please ask your neurologist the questions you are asking us.

We did our best to answer your questions. Now it is up to your neurologist. Please work with him. We cannot post anything more.

You can post again after your next neuro appointment and let us know what he/she says.

Best wishes.
 
Oh no you are the last people I would want to upset. I am in diagnostic limbo and I sincerely apologise if I’ve upset anyone.

I have sat in als clinics for 3 years now and I have seen the devastation it causes first hand.

I will of course adhere to your wishes and not post but do please believe me I had no wish to upset anyone.

My search for a diagnosis may have led me to be one tracked for which I sincerely apologise.

God bless

Sid
 
Sidney-

There is a whole world of weird neurological issues out there- some are completely unique to a single person and will never get a proper and definitive diagnosis, others just need the right neuro to recognize a pattern they've seen before in someone else. If you need answers, you must continue to push for in-person help from doctors.

While you continue to come back to this forum with a worry of ALS, the many many people who have replied to you over the past two years have said in a variety of ways that your symptoms do not follow a pattern that says "ALS". No one denies there is cause for concern with regards to your symptom experience in the last two years, only that you will not get the answers you need on an ALS forum. You've posted 97 times, and each time you have received patient, helpful and informative answers from the most knowledgeable people here.

While folks are willing to help, the forum focus is ALS, which you just don't show the symptom pattern for. The multiple neurologists you've seen have also indicated the same and turned up evidence of something (undefinable it seems) else. While you have cause for worry, it's not something the folks can help you with here. They know the patterns and practicalities of ALS, which do not apply to your symptom pattern and test results.

Again, all sorts of weird neurological conditions out there, you need to keep searching and leave this forum behind. At this point, it is the equivalent of going to a hardware store when you need to buy a car. No matter how many times you ask to see their cars, they won't have any for you because that is not what they sell. If you returned to the same store periodically for over two years and asked for a car each time, maybe changing the colour, or from automatic to standard, in the hopes those changes might cause them suddenly to realize they actually DO have a car, it would end up being pretty absurd.

Sorry, Sid- I am sure this has been a complete trial to you. The added burden of a forum that can't help you, on top of the multiple specialists you've seen who you are unable to take reassurance from about ALS must be very difficult to cope with.
 
Sidney,
Absent a diagnosis that covers all your symptoms (which may not exist, as you are aware, most people have 2+ dx that apply on any given day), living with them seems the most important thing. For example, if you have significant sleep apnea, you should be on PAP therapy, properly optimized.

If your reflux is uncontrolled or if you have other GI issues that may or may not relate, a gastroenterologist could be your next port of call, with an emphasis on symptom control. However, the GI symptoms you report cannot be related to ALS that we have no evidence for, nor does the sequence you describe make sense. Asking about early or late disease doesn't make sense for a disease you don't have, full stop.

As you can tell, the members here who do have or support someone with ALS are exasperated when you pop in to wave another symptom in front of us. You are in London, so I will suppose you have sought advice at one or more academic medical centers. I can't say what's causing the test results you describe, but if my clinical picture was yours, I'd treat the apnea, get the GI stuff addressed and settle down to living a joyful life absent further activity-altering symptoms.

Best,
Laurie
 
Thanks for the rational and perceptive response. I am definitely in what they call idiopathic territory.

Everyone knows something neurological is going on but very good and I mean very good people don’t know what.

It’s a trial and tough but I know and I’ve seen that it’s nowhere near as tough as a definite als diagnosis.

Thank you again everyone for your kindness and generosity of spirit.

I hope to return one day and tell you some definitive news.

Love Sid
 
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