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connieS

Active member
Joined
Jul 9, 2009
Messages
41
Reason
PALS
Diagnosis
09/2009
Country
SGP
State
Singapore
City
Singapore
Hi! I was given a possible diagnosis of ALS about two weeks ago, based on my EMGs. It isn't confirmed, as the neuro would like to wait for 6mths before letting me do the EMG again. I'm relatively young, and I've not heard about ALS before until the neuro told me about it and I still do not know much about it. Tried reading up but there's just so much medical jargon that I seem to be able to understand half of what they're saying.

I've read here that clean EMGs don't point to ALS, but I'll like to check, how can they be certain through abnormal EMG results that its ALS? Is there any way that the EMG results are abnormal but I can have a clean EMG months later? Is it possible that EMGs done at different places can have different results? Have tried reading my emg results but I don't really understand what they're saying. I've had 3 EMGs done after the first one showed some problems, and they all still can't clear me of ALS. How can I clear myself of ALS?
 
I am sorry to say the only real way is to wait, time will tell. An abnormal EMG can be caused many things not just ALS, remember the clinical picture must also match.
 
Thanks Kansatom. Was just wondering as my EMGs done 6mths ago were all clear, so I'm just wondering how come my EMG can be abnormal just 6mths later. Did two emgs last year as a result of severe weakness, which was later attributed to infection, after my emgs were clear. The weakness got better a few weeks later, and I progressively started getting stronger, until recently when I kept dropping things, and bumping into things. Well, I have waited close to a year so I guess 6mths more wouldn't hurt! Meanwhile, do hope to get to know all of you! :mrgreen:
 
Hi Connie, I'm sorry you are going through all of this. The first post says you had 3 EMG's done after the first one showed some problems, but then you said your EMG's 6 months ago were all clear....so you've had to have 3 EMG's recently? Just wondering as I have numerous symptoms but had a clean EMG a couple of weeks ago (going to try and get into another neuro soon to try and see what's happening). Keeping you in my prayers!
 
I wish I had the answers, I will be going to the Als clinic today and hope to be smarter in understanding this disease.One thing I have learnt from the people on line is to wait and see and try not to worry, not an easy task.Good luck
 
Connie,
If you post the actual EMG results, there is at least one person on this site who knows how to interpret them, and when he gets back on he might be able to help you understand what they are saying.
 
Connie, do you have any UMN synptoms?
 
Connie ALS is about having umn & lmn symptoms in one or more areas.....so regarding what u have told us u have been tested as far as LMN signs are concerned ....and we dont know what they have told u bout it...as far as UMN signs are concerned they test it clinically....so have u had it done with ur doc or not....i mean by strenght test and reflexes...have they tested u for that?
 
Hi miss91, Blackpool, rom623 and Kansatom, thanks so much for all your replies! =D Appreciate it.

Yes, I've had my 3rd EMG done in end May, which showed some damage, but the neuro mentioned it was non conclusive, which I'm not sure why. So he had me scheduled for another one end June, on 26th. After the results were out, the neuro wanted me in for another EMG which he managed to arrange 2 days later, as he said my report wasn't very optimistic. I had the 5th one done on 28th June, as he wanted to compare the last two results, if the results were the same, he was gonna give me the diagnosis of ALS. He said this after examining me, both the babinski sign and hoffman's sign were present, as well as with very brisk reflexes. As I was on hormone pills and some other pills when I did my 3rd EMG in May (I was warded in the hospital due to my weakness from 27th May 09 to 1st July 09 to try and find out the cause of the weakness), he had requested the doctors to ensure that I was not taking any medication by the 4th EMG so that the results can be more accurate. So he was concerned that after removing me off the pills, my EMG results were getting worse in the 4th and 5th time.

I do have UMN symptoms, such as the Hoffman's sign. I first felt my weakness when my hands kept trembling on several occassions when I tried to write, and progressively I found it harder to write. I thought this was due to tiredness. This started sometime last year August, on my left hand. It was what got me to see the doctor. When I consulted my GP in September, he was concerned that my left side was much weaker than my right, and referred me to see the neuro. I didn't even realize how much stronger my ride side was until he tested me and asked me to squeeze his fingers, I realized I couldn't do it on my left. I'm a left hander, so my left side has always been stronger. Shortly after, before I could see the neuro, I was admitted to hospital for fever, severe trembling, and I couldn't move at all. They suspected it was an infection of some sort, and I recovered miraculously shortly afterwards. Was discharged after 10 days. Some time in Dec, I did my first EMG, and then my 2nd EMG in early Feb to test for Myasthenia Gravis and Lambert Eaton. I managed to get my body back in shape by walking, though I couldn't walk for long distances, and my strength definitely wasn't as before. I started having this drag my feet thing and on several occasions i would realise that my arms weren't responding. I thought it was the "leftover" from the infection, while they suspected that it was some autoimmune disease, and so put me on observation. Sometime in Feb/March, my right side started becoming affected as well, and i wondered if it was because I was relying on my right side more since my left was weaker. They got me started on a trial of Mestinon to see if it was Myasthenia Gravis, even though they said that my symptoms didn't seem like it. I only took that for 2-3 days, but I was progressively getting weaker, due to the side effects of the mestinon, and so the neuro stopped it for me, as it was inconsistent with the results of my 3rd EMG, and since I didn't have double vision.

Somehow I'm not really worrying at this moment, as nothing is confirmed yet, just want to be able to understand my EMG results more to see what gave my neuro the idea that I had ALS. I'm not sure how come they thought that it was Myasthenia Gravis first, then now ALS. They mentioned that Thyroid and some other disorders were also excluded along the process of elimination after all the tests done in May/June.

How do I post up my results? I got a whole stack of papers, with some numbers and also pages of graphs. Which part would help?

Once again, thanks so much for all your help!
 
Hi Connie,

I'm from SGP. I got UMN & LMN sympton progressively getting worse over 1 yr. I know something issn't right after my dengue fever in 06/08.
But those so call senior consultant/neuro will just ask u to wait and see, review every 3 month. My life is turn upside down and i change from a fighting fit infantry solider in 06/08 to struggle to walk and use my hand in 06/09.

Finally, i decided enough of this waiting game, i when to A&E and was warded end 06/09. As usual, blood test, MRI (Head & whole spine), CT SCAN, NCV. All test come back normal, they can't explain my symptom. I was walking like a robort now. I insisted for more test and the did HIV, MRI (Head & whole spine) with contrast, then found a tumour at my cervical spine. I'm schedule for neurosurgery next week.

I made a GREAT mistake by waiting, hang on there and keep pressing them for answer.
 
Hi Fuso, sorry to hear that you are going through all this! Thanks so much for your encouragement.

I have done brain MRIs as well, it turned out normal, though I'm not sure if it was done with contrast. I have also done MRIs of the whole back with contrast, they were fine. All bloodwork ruled out other diseases, as said by the neuro. I tried pushing, but was fed up with my neuro, as he wasn't listening, so I stopped seeing him in March. They mentioned that they've done all tests possible, but I'm not good with all these medical terms, so I'm not quite sure what other tests are there. I have a copy of all my results though, on films and cds, and stacks of reports. Are there any neuros that you are able to recommend in SGP as I saw my current neuro in another country which was supposedly good with diagnosis of nervous system and muscle diseases. I'm currently keeping in touch with them via email.
 
Connie there should be some written stuff along with the numbers and pages of graphs with words like spontaneous activity, fibrillation potential, Motor unit action potential (MUAP or MUP) etc. Did they try you on IVIG when they were considering an autoimmune disease? My husband had a query of ALS and they did a loading dose of IVIG which he responded to and continues to respond to, and he is now diagnosed with CIDP--MADSAM. And there are a number of people with Guillain Barre Syndrome that has occurred after an infection resulting in neuromuscular symptoms. GBS is often referred to ascending paralysis as the symptoms often move from the feet upward in the body. Wright who is on this forum could interpret your EMG results if you post them.
Laurel
 
Hi Laurel, I was overseas when I did the last 3 EMGs, so there's stuff written, but its all in another language other than English. Its in chinese. I'm not quite sure how to translate it with all the medical terms written there. Would the numbers help?
 
Hi Connie,

Go to NNI@TTSH, at least the neuro listern and perform check diligently. My consultation average takes about 30 mins.
Don't go SGH neuro, they dson't listern, take less than 5min and just ask u to wait 3 month. They even prescrible anti-depression drug when i tell them my problem....they say i'm mad.
 
Hi fuso, I went to NNI for my follow up checks, but my neuro didn't diligently do all the checks. He also asked me to wait and see if the symptoms would go away. When I tell him about my symptoms, he will give an oh is it? He suspected I had MG, but asked me to wait and see for few months. I was so angry when I realized that actually a Tensilon test would have given him the answer as to whether or not it was MG, but he jsut asked me to wait, while my symptoms got worse.
 
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