Status
Not open for further replies.

grumpybear

New member
Joined
Apr 7, 2015
Messages
9
Reason
PALS
Country
US
State
Louisiana
City
ponchatoula
I was diagnosised with ALS on may 6, 2014 by a neuromuscular neurologist he was sure I had ALS. He did emg it showed active generalize disorder of motor neurons, their axons, or both thats a quote from emg report. After a year finally got an appt with ALS clinic at LSU med center in New Orleans La. Dr. there said she would not say I had ALS or i didn't have ALS emg she did was dirty. She said she wanted to do more testing before she would give diagnosis. She also added that she had no history with me. Is this normal. Sorry if I did this wrong and spelling
 
What tests? Blood tests? MRI? If you did not have all the tests she felt appropriate to rule out mimics then even with an abnormal EMG that looked like ALS? ( dirty is very nonspecific) and a clinical exam that looks like ALS then it would be reasonable to hold off the diagnosis. A year is a long time though. Have you progressed? Maybe what you told her about how things have /have not changed made her hesitate.
 
GRUMPY, are you walking, talking and grabbing things with your hands OK?

It is normal to do many, many tests. There is no one test for ALS, so they must do many tests to rule out all other diseases that pretend to be like ALS.
 
I have had all blood test done have seen heart Dr. had several mris of brain and spine done. Am now see lung Dr. who specializes in AlS I have a paralyzed right diaphragm and the left diaphragm shows some paralysis. I'm on a bipap machine at night the settings have been up on it twice in the last year. I have also been put on oxygen when needed during the day. PCP says there is no more testing that can be done. lung Dr. did over night test and c02 levels high and 02 levels low he also agrees for him there are no more test he can do and his belief is ALS
 
No having trouble with fine detail work with hands I'm a mechanic hands don't work the way they did its hard for me to start nuts and bolts any more. Walking is difficult I stumble and trip a lot i have to be careful were i walk my left ankle is very easy to turn i turned it 3 times in the last 4 months stepping on things less than 3/4 of an inch high steps are tough can't go up them with anything in my hands. I walk and talk like I'm drunk and people I work with have made that comment. Voice is low its hard to finish sentence's. Eating tire's me out I have to eat slowly and chew every thing into a paste so I can swallow it. I told Dr. in New Orleans this also brought all med record's and test result's with me she didn't want to listen are look at record's. All I want is a answer
 
atsuqi and Nikki thank you for your reply's sorry if I'm doing this wrong not real good with computer's. the one thing I don't want is ALS or to offend any one on this site ya'll have enough to deal with that is why i have not posted till now i have been following this site since oct. of 2014. thanks again for your help
 
Your first 2 replies went to moderation which is why you could not see them until now. There are trigger words that send posts there. You did nothing wrong!
I am sorry to hear of your issues. If you brought all those tests with you what tests did she then order? More blood? Is there a plan to go back at a certain interval for results and a diagnosis? If you have documented respiratory issues that the pulmonary says are consistent with ALS, speech issues ( slurring)? And issues with your arms and legs as well as an EMG that looked like ALS? And negative MRIs? I am wondering what she is still considering. I hope you were given a definite follow up plan soon.
 
Keep us posted grumpybear, my symptoms started the same way, I am two years into this and can still walk, can't eat or talk, breathing is real bad.
 
My Doc told us that the treatment for Mathis will hurt patients with ALS.
 
Thank you for your reply went to lsu med because they are ALS clinic close to me. I live in small town in Louisiana the drug is pyridostigmine br 60mg. No have not started taking it yet there was a screw up with Dr. they didn't call it in till fri last week. I spent thrus fri and sat in hospital because of breathing issues sorry about spelling and the way I write this its hard some times to get what I want to say out I saw Dr. at LSU on the 25th of may and just now got meds. Up until may of 2014 I didn't know ALS existed that's what took so long to see Dr. at LSU. I was sent there by my neuro here at home because he knew her and trusted her. Don't understand all of this. I guess the problem she has is that I'm still walking. It has effected may lungs more now than anything else. Thanks again
 
I know of a couple of people with ALS who took that as it seemed to help with fatigue. It did not of course help the underlying ALS
If you were not in LSU this weekend get all those records for your next appointment and take them with you

At this point you should certainly follow up at LSU but you might want to see if you can get an appointment at Tulane as well. It won't be until after this next LSU one so if the next appointment addresses your concerns and you are comfortable at LSU you could cancel but if not you would be set up
 
Grumpy this is just awful for you. To not have ALS would be awesome of course, but to go through this after all this time...you are in my prayers.
Please keep us posted on the progress with the clinic.
God bless, Janelle x
 
Grumpybear, this same thing confounded docs with my husband. He presented with a paralyzed left diaphragm lots of breathing issues but walking around with good strength. Luckily his neuro's brother is a well known pulmo in Canada and she talked to him. A ct scan showed the phrenic nerve was not pinched by a tumor or anything else so that wasn't causing the diaphragm issues. Sniff test showed how limited the right sided movement was also.

At this point the blood test for myasthenia gravis was done. MG typically has facial./eye involvement we were told.

I wouldn't take the medicine, I would go to Tulane. You need to get to where they know neuromuscular diseases. An mda clinic would also work.
 
Thanks gooseberry when i was in hospital in Dec 2013 for what they thought was pneumonia that's when they found right diaphragm was paralyzed and some paralysis on left diaphragm. They did MRI and found phrenic nerve it was in tact and not damaged neruo told me it could only be a motor neuron problem and I needed more testing. I did breathing test so they could see how much I could use left lung I don't remember the number's they said but was told I would always have problems lying flat on my back they were wright I can't. Since then I've been put on bipap machine which pressure has been increased twice and oxygen has been added Dr did over night test and said o2 was low and c02 was high I can walk feel like balance is off can talk sound drunk. Thanks again for info and reply
 
We don't mean to pile on, Grumpy, but oxygen use is rarely a good idea in ALS. This could be another indication that whoever you are seeing right now could use an upgrade.

I agree that I wouldn't jump on that drug just yet. It can have significant side effects, is used w/ caution if at all in certain types of lung disease, and it does not sound like you are being monitored that well. Nor has anything you've said yet sounded like MG. Have you had any vision or eye problems? Do your strength and breathing get better when you rest?

If Tulane is in your plan, I would call there and see what the prospects are for an appointment, that is a "second opinion for ALS vs. MG." I would also get ahold of the local ALSA or MDA chapter, or both, and ask if they have any other suggestions for resources in your area.
 
Status
Not open for further replies.
Back
Top