small update

[wendya432]

Just wanted to update. My EMG came back normal. So that is good news. Of course the neuro exam showed definite umn problems. And the spinal tap came back mostly normal, some blood but probably from the needle getting blood on the way in. Somehow my blood sample they took at the same time got messed up or lost or something so they were unable to do he o-band testing. But otherwise everything looked fine.

Currently on vacation at the beach. Right now I am taking a break as my legs have said enough, no more walking! I think I've over done it and not sure if I will recover from this point or not.

Neuro's nurse said they will be in contact about what to do next. So still at the point that we have pretty much ruled everything out and know I have some progressive umn issue. Sure seems like pls, but I'm guessing neuro wants to give it time to see if anything changes.

Sure wish I hadn't pushed myself so much. But it was nice to walk on the beach for the bit I could. Not sure how much longer it will be possible.

 

[JustTrying]

I'm glad your emg looks good. Enjoy things as much as you can and rest in between. That is exactly what I'm doing. I find I feel jello like on the day of if I overdo it, but I feel really bad a day or two later. It's hard when you have young kids though. My 5 yo doesn't understand why her previously active mama sits so much.

Anyway, I'm glad you got some good news. But not having answers is frustrating.

 

[olly]

Hi wendy.
Great news about your emg results,thats a little weight lifted.
Unfortunatly with the diagnosis process it can take some time.
Hope your having a great vacation and please try not to overdo it.

 

[Bad Balance]

So not PLS....just here to chit chat?

 

[olly]

Jerry,the emg was to rule out als.
She is still suspected of having pls/umn problem.
...........Play nice jerry sweetie.

 

[Bad Balance]

You are right....sorry

 

[R9L13026]

Glad to hear your EMG is norm. How does your doc decide you have a umn problem? I was under the impression that the weakness in the extremities, leg, arms etc were from lmn. I'm trying to understand this umn and lmn thing. Thx.

 

[AKmom]

Glad to hear your EMG is norm. How does your doc decide you have a umn problem? I was under the impression that the weakness in the extremities, leg, arms etc were from lmn. I'm trying to understand this umn and lmn thing. Thx.

UMN problems do not show up on EMG. Rather, they show up in physical examinations such as weakness, hyper reflexes and spasticity, to name a few. LMN does show up in the EMG and has symptoms such as muscle wasting. This is something that PLS usually doesn't have.

 

[wendya432]

The UMN signs show up in the clinical exam, but not on the EMG. From what I understand the weakness from UMN problems don't come along with the atrophy that LMN problems have. Also, decreased endurance, decreased muscle tone are present along with increased reflexes (spasticity, babinski reflex, clonus, hyper reflexes, etc)

 

[IhavePLS]

Wendy, also glad to hear your EMG was normal. That's the best news you'll hear....and yes, diagnosis may (and likely will) take some time.

Actually, muscle tone in legs and arms is increased (not decreased) in PLS -- this is what causes sensations of spasticity and pain. And it is true that some folks with PLS do experience atrophy - although my bet is this probably occurs because of lessened usage of specific muscle groups.

 

[wendya432]

Had my appt with the neuro last week. He did some more blood work, which just came back normal. Of course, everything always comes back normal! STarted me on baclofen, which helps but makes me so tired. He also did a blood test for some fragile x thing. But there are no males in my family with anything like this, so I can't imagine that it is that. But I guess we are going through the check list still, checking everything off that we can.

Basically he said right now my progression is going to be my normal and no need to call about it unless there is a major change or I need to change my meds. But I need to go back and see him in 3 months and we will go from there, possibly a muscle biopsy then. Also he was concerned about how I fall when they do the test when you stand with your feet together and close your eyes. He said it was ataxia. Not sure if that is part of PLS or if that means we need to look in a different direction?

So we are still at a progressing form of UMN disease, all tests normal except my neuro exam. (babinski, spasticity, weakness, etc)

Not sure if I really belong here or not, but the information I've gotten from reading has been wonderful. Since basically I have the same thing going on with the UMN damage. Not sure where else I belong!

 

[olly]

Hi wendy.
Baclofen will make you fatigued at first but you need to stick with it,it does get better.
You should be started on a low dose and increase till you feel a good relief of symptoms .
Everyone is different regarding to dosage,just play with it till you feel ok.

Yes ,that test is to detect balance issues caused by neurological illness/trauma.
Its not specific to pls but it is seen in pls/als patients.
I only last about 2 seconds and start to fall......though my eyes open balance is not that bad....go figure!.

You belong here with us so don't be going anywhere.
Some people end up getting diagnosed with something else but they still stay.....they can still relate with some symptoms ect.....still have friends here.

 

[Txgirl]

Wendy, Olly is right. You need to stay here for support with your illness. There are people here with other diagnosis besides ALS. A lot of symptoms are the same and you will benefit from the people here and the wealth of info. Take care.

 

[dalvin]

new here too. getting answers is frustrating. started having symptoms bout ten years ago but docs always blamed it on something else. one of my symptoms (feeling like my throat was being squeezed to the point i could not breath) the doc said was impossible and called me a liar. it wasnt until i started falling down that they took me seriously, now use a cane. one thing bout they baclofin, for me ant way, bout the first two weeks of taking it i was exremely nausiated. going to the als support group meetings ( only option here) can be frustrating cause you here bout the things being done for als people while almost nothing being done for us. found out that all the tests that were done are not to confirm pls but to rule out any other possibility, there are no tests for pls

 

[olly]

Hi dalvin,welcome to the forum.
You are right what you said....we are more fortunate than our fellow pals though.