Annual follow up

[Alyoop]

Well fellow UMN syndrome peoples, I had my annual check up on Monday. I was ridiculously nervous. It was however interesting. I left my body and sat in a back seat, while my Hubby and neurologist discussed my situation in a series of letters with attached numbers. I decided the out of body experience made more sense than they were.

All I new was my good leg was now affected with spasticity and clonus, when a year ago it only had brisk reflexes. Well that answered the question, why my ability to go up inclines had deminished. It was decided not to do an EMG for another 6 months.....yay.

So doctor very happy that I was still breathing and swallowing cause he expected me to be having trouble. Me, well I saw a 100% progression, when 1 leg was now 2. Don't you hate it when the room is full of happy doctors and you just want to scream......." I am not a knee with clonus, I am a person attached to the knee"?

Well it seems there are some jazzy new hereditary motor neuropathies that have UMN signs and normal EMG ( discovered by my Hubby, when he should ne writing his thesis on the computer). They have blood tests for them so you guessed it, once my poor doctor has done some research to find the info himself, I will trundle off to the lab
Apparently the sands are constantly changing in neurology, new syndromes, new tests. Those were their words

Oh the joys of being a neurologists wife!

So now the goal is to disprove the pls theory, as they don't like the outcome of that illness......or they could just leave me alone, that's a thought.

I eventually came back to rest in my body, once they remembered that I was still in the room.....

So alls pretty good in their eyes, and I am off to get my bread out of the oven, like it never happened

Love to you all......you limpy, sweet bunch of people
Aly

 

[Ms. Pie]

I'll have to try that out of body trick and soon! You go girl! xoxo!

 

[Tokahfang]

I never understood that quest myself - I have whatever I have, if you rename it something cooler it doesn't change what I'll experience. All tweaking the name can do is make for truer expectations.

I'm glad you don't have weakness, very slow progression there... awesome!

 

[Alyoop]

Oh so true Beky.

 

[olly]

oh aly,i would hate to have a neuro for a hubby............he would end up divorcing me for nagging him with questions every two minutes lol.
i have had the detached feeling before,sometimes you go to your appointment and you just can't be bothered with it all.
as we all know pls is a clinical diagnosis its never 100% certain till autopsy.............when do we stop searching for other answers?
i'm stuck on mitochondrial disease,in two minds if i should mention it at my next appointment..........do you leave it alone? or maybe take that step and further testing ?
you are a good housewife doing your bread in the oven,i cheat and use the breadmaker lol.

 

[Alyoop]

Olly, you should ask or you will never know and always wonder

 

[Tokahfang]

I agree with Aly, if it is eating you, ask! The important thing isn't whether the medical establishment knows, it's if YOU feel comfortable with the information you have.

 

[Zaphoon]

Aly, I'm so glad you made it back into your body safely!

I learned a few days ago that the V.A. neuro that was seeing me after the first one retired has subsequently left the V.A. himself. This leaves the neuro that performed the spinal tap on me. At the time of the "tap", she confessed to having taken a quick look at my chart and telling me she didn't think I had PLS. My next appointment is with her in late August. This will be interesting! Maybe I can get her to agree with me in that I just have a bad case of CFS with pathologic reflexes thrown in.

The neuro that retired on me had written that he planned to follow-up with another series of MRI's, blood work-ups and EMG/NCV tests down the road. That was 3 years ago... pretty long road!

 

[HelenL]

Aly, glad that you're back from the doc safe and sound, and stop floating around the room above them all!

Seriously, I know what you mean about your "good" leg now behaving badly. I also was walking much better at my diagnosis last year, and can barely get myself upstairs these days. And online shopping is now the way to go for me most of the time, unless they have scooters in the store.

I still want to hear something else than what my original diagnosis was... I just don't think what I have is what they think I have... and another EMG is in the works for me as well, but I pushed that off 'til fall.

Zaphoon, maybe your new neuro is going to be a blessing for you! I remember my Aunt (who's now in her late 80's) was upset when her long-time asthma doc passed away, but it was a blessing for her, as her new doctor (this was in the 1980's I think) said, why are you on those old meds, try there! And for the first time in her entire life, she was able to go out and walk, learned how to ride a bike, all the stuff she was never able to do growing up. So I pray that you'll have the same luck.

On another note: has anyone gone to the restaurant "Five Guys"? The best thing about having roommates is when they volunteer to run errands, so I sent my son off with my roommate to pick up some food. Their french fries are unbelievable! Burgers are pretty good too.

 

[Alyoop]

Well and truly back in my body.......enough talk of French fries and burgers, haven't touched either in 6 months.

Kim, I do hope the new doctor has an open mind, but new doctors often mean a new search, which I find unsettling. You and I sound very alike, with our pathological reflexes etc. We may never really get to an answer, till, like Olly says.....autopsy.

Helen you will not like me very much for what I am about to say, but I am not always as honest as I would like to be on this forum, ........you are on a clinical trial, they DONOT put people on trials if there is any doubt about the diagnosis. That's what the screening visit, inclusion, exclusion criterias are all about. They are very careful to make sure there is never any doubt. I know as our ms patients need to meet strict criteria and I do a lot of paperwork! Sorry, but you are a good friend and I must be honest, sorry.

 

[arkallen]

....... That was 3 years ago... pretty long road!

It's a long road alright!
I enjoyed your report Aly, hold tight.

 

[notme]

Now see--that's why I'm in the "Don't care what it is--treat the symptoms" and leave it alone

Hubby as neuro would divorce me, too. I remember when I was married to my ex. He was a respiratory therapist. He called me after we divorced telling me he was short of breath.

I trudge over, take out my stethoscope and listened to his lungs. NO lung sounds on the left side. Did he BELIEVE me and go to the hospital? Nope. He waited til his brother found him unconscious on the floor the next day--with a collapsed lung.

I really just don't care what's wrong anymore. I can treat issues as they pop up. I'm 50---if they haven't figured me out yet, they aren't going to any time soon, I figure.

Glad you found your way back to your body.

 

[Alyoop]

Yip, back here that's for sure fell up the stairs to proove it.lol

Gotta chuckle patty or I would just curl up and cry.......and that just makes things worse.......it's a new hairdo and a new car for me.......oh and another trip coming up.......gotta love the bucket list and over anxious Hubby who can easily be wrapped around wives little finger

Oh and I am joking ( I think)

 

[LizT]

maybe you could tell hubby that you just HAVE to have your friend Liz come visit you- put THAT on your bucket list! LOL.
Love u Aly!

 

[HelenL]

Aly, don't worry about being honest with me... I'll still love you!

The funny thing is, I still feel like I am an imposter, but I do know that I fit all the clinical signs... that said, my neuro needs to do another emg to verify the initial findings, but I put it off until the fall. Both of my neuros (actually 3 total) keep telling me that all my signs point to ALS, but there are things that just don't fit either. It's almost like they just sort of shrug their shoulders, and wait and see if anything else pops up, but of course, it hasn't yet.

Liz, don't hog Aly, maybe she has to do the grand tour of the U.S. and visit us all!