You Are Not Alone: S is Difficult to Diagnose

[furballfury]

Carri-

My dear, you are letting your mind get the better of you. It is "very hard to diagnose" **S in the context of something SERIOUSLY WRONG - that much is true. That is because other diseases - Lyme, SMA, some other MD's, ME, even some spinal cord issues - have a lot of overlaps with **S, and doctors are slow to confirm a diagnosis because it is in essence a no-cure ruling for someone. If they are wrong, they can subject the patient to tons of mental anguish, pain, and themselves, potentially to a malpractice suit.

But you MUST remember the CONTEXT around this - it is difficult to diagnose when things are going seriously WRONG. In your case, they are not. They bodily sensations you are feeling are NOT what the people had to whom the stories of difficult diagnoses relate. THEY JUST AREN'T. You do not have true weakness (have you ever had a limb COMPLETELY fall asleep on you to the point where you just CAN'T MOVE OR EVEN FEEL IT? - that is the type of weakness we are talking about). You do NOT have atrophy/wasting - believe me, if your husband doesn't look at your legs and FREAK OUT you do not have true atrophy. You have NOT failed a neurological exam, nor have you even raised concern in a single neuro/doctor you have seen. None of this applies to you, so the stories you have read that freak you out so much DO NOT APPLY TO YOU EITHER. Period.

I am going to put a link in here to a discussion I had with a neuro that I think answers your question(s).



Please only read the first post (the Q&A), as the rest of the thread wanders unnecessarily into "what if" land. You should find this interesting - and this is a neuro who treats a number of **S patients. You might also find it interesting to look at the myriad of symptoms I had already suffered with and this was close to a year ago (and more than a year after it all first started for me), and I am still just fine - some ups and downs but nothing sinister. YOU WILL BE TOO. Getting a grip on all of this is your most important step to overcoming it, and ONLY YOU CAN CHOOSE TO DO THAT. No medication, neurologist or test will produce that result for you.

PM me if you need assistance - we will get you through this.

JG

 

[BandersnatchF]

It's "very hard to diagnose" A/L/S for a reason—there are so many other things that need to be ruled out first. It's rarely (if ever) the case that someone comes in with a complaint that they're twitching, has a clean clinical exam and EMG, and still gets diagnosed with A/L/S down the road. The few times that it happens (and, yes, it might) are most likely due to the fact that, while BFS doesn't make you more likely to get A/L/S, it doesn't make you immune, either.

Only 1–2 in 100,000 people will get A/L/S each year, but you'll remember the few cases where the person had BFS first. You'll ignore the vast majority of A/L/S cases (well, OK, there aren't that many) in which weakness and other symptoms appear first. It takes a long time to diagnose because they want to rule out other, treatable, diseases first. In many cases, the doctors suspect it initially, but have to run many tests to rule out everything else.

In response to those who say that there isn't an A/L/S test, you're right. However, there are lots of "non-A/L/S" test results. It's a diagnosis of exclusion, so there are plenty of tests to rule it out but none to specifically rule it in. In that sense, the clinical exam and EMG are both good tests to rule it out. Clean ones are an almost certain clean bill of health with respect to A/L/S. A dirty test on one or the other is only a prelude to digging further, not a final diagnosis.