ALS, PLS, MG disease ?

[icecreamlady]

Hi everyone. I took some time off the forum, and Im back.. I;m like a groundhog in the winter... LOL.. Spring is coming! Just an update my Dx is up in the air at this point. I still have weakness in upper body and pulmonary muscles. Im on a new Avap/ vent machine called the trilogy. I use it at night and when needed during the day. I was diagnosed with PLS last June. Then I started with pulmonary muscle weakness, making breathing a hard at times. So they thought I was going into ALS. I had an EMG in Novemeber and it was negitive for ALS. It did have abnormal areas? Anyway they thought I may have myasthenia gravis, blood work negitive for that... so now Im a misfit, and need to go to santa misfit island..... LOL Muscle weakness in upper body is worse and neck is getting weak....

Last week I had pulmonary function tests. Test scores are lower, pulmonary doctor said maybe another EMG in June. Can ALS be diagnosed with an negitive EMG?

I feel like a lab rat...tired of it all. I go to Neurologist at ALS clinic next week....

Thanks everyone....Lora :razz:

 

[irismarie]

how I sympathise. Often I feel I dont give a damn about getting the right diagnosis, just say SOMETHING and give me a break and let's just get on with living as best we can...............thank heaven you at least have adccess to the ALS CLINIC; hERES HOPING FOR OYU
lOVE
iRIS

 

[rose]

Hi Lora,

I was diagnosed with bulbar palsy. I did have an EMG of bulbar area diagnostic for MND, but my limbs tested normal. Eventually I started having some issues with my limbs and the diagnosed changed to bulbar onset of ALS (without further EMG testing). Later when several months had passed, my neuro decided to have the limb emg repeated, and it still did not show the changes. (They only stuck me a couple of places, but it should have been enough) I consequentially had a single fiber emg, and it did show what would be seen in either MG or MND. I'd had loads of immunosuppressants earlier in the diagnostic process, plus repeated testing of antibodies was always normal, but, because of the SFEMG findings they decided to try me on mestinon. It did not help me at all, and made me feel worse.

So, I didn't get un-diagnosed with PBP, but the question is still there that something else might eventually come into play that would point to another cause. Right now my neurologist said there is nothing left to test for, and I am seen at the ALS clinic.... my voice is affected, swallow, breathing, & areas of weakness in arms and legs. My CK levels are elevated, but not super duper high, just moderately so.

Have they tried any sort of immune modulation therapy with you? Or mestinon? Have you had a single fiber EMG? A fairly large percentage of people with myasthenia will still have normal blood test results. How are your reflexes?

Do you go to Pittsburgh to be seen? If not, perhaps this might get you some answers. Hang in there, and good luck to you.

welcome back.

 

[icecreamlady]

Thanks Rose. No, no immune modulation therapy...My CK level is elevated too. I also have a postive ANA. Last year my reflexes were hyper..
now they seem slow. I have lost my gag reflex, and also have trouble with my voice. I am blessed to live close enough to Pittsburgh, so I have really great doctors.

I go to the neurologist at the ALS clinic on Monday, so I will see what he has to say. Thanks!

 

[icecreamlady]

I had my appointment with the ALS doctor. I had more bloodwork done. They are testing me again for MG, with using a MUSK antibody test.
I am praying for MG... I had Aldolase and Ck test all negitive. I had read that it would not be a muscle disease, if these test are negitive. That leaves a MND....I am tired of all of this testing. Maybe its just a cold? LOL

 

[serenade]

Who are you seeing? I can give you some names in Pittsburgh if you need a second opinion.
Take care
Judy

 

[Tokahfang]

I am in a similar position in many ways. Ultimately, once it was down to some kind of untreatable motor neuron problem, I relaxed. Progression is individual anyway. If none of the options has a cure or palliative drug, then there is nothing I am missing out on that way. The ALS Foundation has been really nice about helping me out despite my limbo, and my insurance continues to grant claims. I am barren, so the genetic possibility isn't a huge deal. I continue to go to my doctor however often he thinks is good, but otherwise I see myself as free to live my life of progressive disability as well as I can. It is not a journey I would ever have signed up for, I am sure no one with MND would have! But there has been a lot of joy and tears and life along the way, and I can't imagine having lived any other life.