Read This about EMG & ALS - Page 5

Flowerpot · 01-11-2009, 07:04 PM

Al

You are very naughty - I can be a right snob , but am not rich and certainly not old enough to be your Auntie.....!!!!!

You are a real champion though.

Kind regards

Flowerpot

CindyM · 01-12-2009, 02:22 PM

Well, I want a rich Aunt, snobby or otherwise!

If they are supposed to be in every family, then once again, mine got left out!

rose · 01-14-2009, 01:52 PM

I had a rich aunt, that was not snobby at all, but I never got to know her because my mom didn't like her. (it was my father's older sister) Though we lived in the same city, I saw her once as a child, even then I didn't really meet her, some other adult had just said to me that she was my aunt. I really missed out. Thankfully she made overtures after I had my daughter, and even though by that time I was living in the north, and she in Alabama, we eventually spent some time with her, and made some memories. I'm so glad I got to find out what she was truly like.

When I first met her, she was in her upper 70's and was still doing meals on wheels, and volunteering at a soup kitchen.

BNR1 · 05-18-2009, 03:35 PM

I'm new to forum- my fiance has been told he has ALS, it began aprox a year ago in his right ankle- diagnosed with drop foot, MRI of hip and spine were all normal, blood, ana and urine test all negitive, no diabetes, no auto immune... high level of arsinic and mercury however, 2 EMG's were done but not sure of results, his other symptoms include upper extremity twitches (worse with anxiety) minor fatigue, muscle cramp in calves, no sever progression in the last year since drop foot began but weakness in that lower extremity. He was told he likely had MND and a 70% chance of it being ALS and will see the neuro again in a few weeks to discuss Relotek (sp?) and to see if he can get into clinical trials for ALS. Does this sound like ALS, PLS ??? Are there any tests or qustions we should ask? Is it slow progression since no bulbar muscles yet involved? Would it be letter to hope for PLS?

Zaphoon · 05-18-2009, 04:51 PM

BNR1,

I'm for waiting to see what happens to the "30% it's not ALS". One very good thing is that you stated your husband has not had much progression within the last year. That makes me hopeful it is not ALS. If it has to be MND, lets vote for PLS (its a little kindler and gentler disease). Neither of them are any picnic.

I'm hoping for the best!

Zaphoon

Trevor · 05-19-2009, 02:01 PM

Quote:

Originally Posted by ltr

Thanks Al for posting this. Maybe this will ease the mind of the members who think they have als, but have had normal EMG's.

If you have a normal emg does it rule out ALS

Al · 05-19-2009, 03:07 PM

Most times. There have been a few here that have had clean EMG's and a few years later they turned dirty. You might not have cancer today but could get it next year. Your symptoms don't sound like ALS and with 2 clean EMG's I'd be looking at something else.

AL.

Erica · 06-03-2009, 08:15 PM

I started with pretty severe arm and shoulder pain, two month later discovered that I developed muscle atrophy in the above area plus the neck on the same side.No weakness, more trouble with pain.
Have pain in my throat for a while, feels like a have a constant sore throat, and constantly feel like clearing my throat. Also waiting for an appt with ENT.
Had 2 neg MRIs, negative EMG and now waiting for an appt with neromuscular specialist that my neuro referred me to. He also wants me to have the muscle biopsy.
I really would appreciate your help with making some sence out of this. I'm really scared...
Do any of you experience any of the above. Your answers would be greatly appreciated.
THANKS.

Al · 06-03-2009, 10:37 PM

hi cookie. To me it sounds like a pinched nerve. Pain like you describe is not usually ALS. I'm no doctor though.

AL.

sharona · 06-28-2009, 10:44 PM

BNR1.Don't the doctors have a great concern about the high levels of arsenic & mercury.I would be pushing to find out why he has these high levels, that is not normal.good luck to your fiance.
Sharon

connieS · 07-09-2009, 07:28 AM

Hi all, I'm new to this forum, I've just been told about ALS, and I've never heard about it. I wasn't exactly sure what it was until I Googled it. I've done a total of 5 EMGs, the 1st was done in nov 2008, 2nd in feb 2009, and the neuro said they were both clean. The recent 3 EMGs done end of May 09, and 2 in end June 09 all showed abnormalities and the neuro then mentioned ALS to me. As I'm relatively young to have this disease, he's put me on observation and said he'll wait and see if the abnormalities persist in the next EMG to be done in Dec 09.

My last 3 EMGs done recently were done at different hospitals, as the neuro wanted to be ensure that the results could be trusted. I'm not sure how to read the readings, so I'm just gonna quote what my neuro said. The 3rd emg seemed okay, except for what he mentioned as slight damage to some nerves. My neuro said it was mild and its okay, but as the reports were somewhat inconclusive, he asked me to go over to another hospital, just to be sure. I went over to that hospital on 26th June for my 4th EMG, and the doctor who performed the EMG was concerned as there were problems in all 4 limbs and my neck area. I went to see my neuro on 28th June, and after an examination, he mentioned that he was concerned, with the EMG results and new symptoms that he can now see. I wasn't sure what new symptoms he meant as I had told him that I was feeling much better compared to the last time he saw me in May! He then asked me to go over to another hospital the same day, for another EMG, as he wanted to be sure of the diagnosis. The last EMG which I did showed similar results as the 4th one, but he mentioned, it was a little more optimistic. He then mentioned to me the possibility of ALS as showed in my 5th EMG, to which he said the confirmation can only be done after approx 6mths if my EMG does not improve.

I've tried reading my EMG results, but am not sure how to read all the numbers. I've done MRIs, lumbar puncture, CT scans, bloodtests, with suspected Myasthenia Gravis initially, but EMG results have overthrown that diagnosis according to my neuro. All of them returned normal results except for my EMG. But I'm amazed as just 6mths ago, my EMG was clean.

I've a few questions here, would really appreciate if any of you could help me out:
1. Can my EMG results deteriorate so fast within 6mths?
2. Can EMG results differ from hospital to hospital?
3. Can EMG results become clean again?
4. The doctor mentioned I have muscle atrophy. How do they check for this?

As of now, I've been given tonnes of vitamins and stern instructions to eat as much as I can to try and gain back the weight i lost.

lorriefauver · 03-05-2010, 01:20 AM

I'm not actually a doctor but according to me your symptoms are don't look like ALS to me.

Karin Bolette · 03-15-2010, 07:37 PM

Hi- my name is Karin and am just in the process of getting diagnosed.

I go for my emg some time in April. I live in Toronto, Canada. I gather most members live in the States. I've had twitching in my right hand, in my right thigh and my calf but mostly on the left side of my face, my cheek and around my eye. I thought it kinda of feels like my nerves are boiling, bubbling that is.

I don't have much involvment in my arms and legs, mostly in my mouth, throat and am very short of breath. Don't feel like I can do anything any longer. The last 2 months my hands are getting weak. Can't play my guitar now or close my hands, they just feel so tired. I have horrible cramps in my neck and around my throat- feels like I'm being strangled. I've been told these are Bulbar onset symptoms of ALS. From reading the blogs it seems most people have limb onset is that so?

rayray123 · 03-15-2010, 09:06 PM

Hi Karin,

Im so sorry for what you are experiencing! I wanted to tell you that no-one will probabaly see your post because you posted in the sticky section. Thats mainly for reference. I didnt want you to think no-one cared, because here at this forum, you will find LOTS of support from LOVING people.
Try posting in the other sections, like Do i have ALS, ect.....If you look on top it says in blue, "new thread" you can start your own NEW post........All the best & Im praying that the EMG will turn out ok,
RayRay

BarryG · 03-15-2010, 09:31 PM

Hi Karin, welcome to the forum, sorry you have to be here. The stats (for what they are worth) show that 75% of PALS are limb onset and 25% are bulbar. Bulbar onset (me) is typified by slurred speech at the beginning, followed by swallowing problems and eventually progressing to complete loss of intelligible speech, the inability to eat or drink and limb problems.

Many members live in the US but there are a lot of us on this side of the 49th too and don't worry, we won't hold the fact that you love in TO against you

Barry