You might remember my thread about suddenly being able to hear. Well I had a hearing test and it was normal. Apparently perfect hearing.
Then by some miracle, I ran accross this: Landau Kleffner Syndrome
It fits my life to a T. If diagnosed I will be the 161st person and by far the oldest. Autism runs deep in my blood and I have a mild form of it. Never been diagnosed.
How do you go about explaining something to a doctor like this? I tried and they tried to have me committed. It really might be true (it does go away with steroids) and whatever Doctor helps discover (if it is there, I recognize it could be in my head) – They will be famous.
Hold out for the best possible multi-media deal you can. Think Shine or [iA Beautiful Mind*. Your story could be called Huh? What? and could star Keanu Reeves!
Basically my language has slowly been restored over the last five years. I started to hear music about 5 years ago and the better it gets the more I can play the piano.
I’m probably going to be flying to PA to see my cousins counselor who deals with highly functioning autistics. He might be be most helpful since he is a family friend.
If you are diagnosed, you’ll probably be written up in medical journals. My mother was mentioned in The New England Journal of Medicine for having contracted some sort of rare childhood ailment (involves a welt-like rash over one’s whole body and fever) that stems from Psoriasis - until she got it no one over the age of seven had ever been diagnosed with it.
A friend’s brother and father were both written up in the medical journals.
Her dad for having the largest skin graft in the southern hemisphere (a result of radiation burns from a badly calibrated X-ray machine…no, seriously) and her brother for having drunk sheep dip and survived.
MrPlatypus-write up ALL your symptoms, and discuss them with your doctor, asking to be referred to a neurologist.
In the mean time, the site I found recommends writing to:
C.A.N.D.L.E.
4414 McCampbell
Montgomery,
AL 36106.
It’s the liquid that they use to kill external parasites on sheep. Sort of agricultural strength flea powder. The sheep are either sprayed with it or dumped into a bath of the stuff, usually on an annual or bi-annual basis.
My friend’s brother drank some of the undiluted sheep dip as a child. He was in a coma for 3 weeks, assumed to be severely brain damaged…then he woke up, asked for ice-cream, and turned out to be absolutely fine.
Yeah if it is not this disorder it sure is remarkably similar.
Whatever is going on it sure it remarkable. Faster than you can stap your fingers the whole world just comes into focus and I’m functioning as the smart guy I always knew I was.
I’ll be seeing a lot of doctors in the next few weeks so hopefully we can start to get a grasp on this and start to document some of it.
Hmmmmm. My understanding of LKS dates from 7-8 years ago when my nephew was tentatively diagnosed with it: severe speech delays, seizures, and severe autistic symptoms. He did respond to steroids but was by no means “cured”, the steroids simply reduced his EEG abnormalities and stimming somewhat. And only at such doses that the side effects were unacceptable. Ultimately, though he had the response to steroids, they decided he had another flavor of autism - seizures are more common among autistics in general, and there are a number of specialists investigating the autoimmune component many autistics seem to have.
Honestly, my gut feeling is that you don’t have LKS, or you wouldn’t be functioning as well on this board as you do. It sounds like LKS comes with such severe communicatin difficulties that there’s little chance you could have gotten by without some sort of diagnosis (even if it was a misdiagnosis, you’d have been labelled with something).
Not to say that there isn’t anything wrong. Many folks with autism have expressive or receptive language disorders. I don’t recall the details of your on-again, off-again hearing (as in, like turning off a switch? or like everything being overlaid with static?) but the whole intermittent situation doesn’t sound like a central neurological disorder - more of an “outlying” thing.
Could be there’s something inflammatory impeding your hearing, that the steroids helped. Maybe some inflammation around the auditory nerves, maybe something triggering fluid in the ears, or whatever.
Anyway - usual disclaimer, IANAD, my opinions are worth about what you’re paying me for them but while it couldn’t hurt to pursue evaluation by a neurologist and/or someone who specializes in diagnosing autistic-type disorders in older people (not sure if you’re a teenager or an adult), you might also want to consult with an ENT and/or an audiologist if you haven’t already done so.
Yeah I really have no idea at this point. I’ve been struggling for a while now but didn’t really know what to tell a doctor since I had no idea what was wrong. Now that I have an idea I’m going to be seeing all sorts of specialists in the upcoming months. All I know is that when this does go away I lose all my autistic-like traits and can hear so much better that I can play the piano by ear. I don’t feel smarter, I just feel like I can instantly comprehend speech like others do.
There is clearly an autoimmune component to this as well. It runs in the family (along with autism) and I even had arthritis for a short while.
but while it couldn’t hurt to pursue evaluation by a neurologist and/or someone who specializes in diagnosing autistic-type disorders in older people (not sure if you’re a teenager or an adult), you might also want to consult with an ENT and/or an audiologist if you haven’t already done so.