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worried2014

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Hi, my previous thread ended up rambling on so I am glad it has closed.
I have not been on this site for a while as I was taking some of the members advice, and my EMG is due on 8/4 so hopefully most of my concerns will be addressed then.

However, my quick question for the day is regarding limb weakness. If for example you were finding it very difficult to say, clean your teeth , stand on tiptoes, or hold your mobile phone up for anything more than a few minutes, ie, the limb in question starts to feel very tired and it is a real battle to continue doing the movement you are doing, but you can do it but this results in the area starting to ache,twitch and eventually become painful, could this be indicative of als? I ask only as I understand that pain is not a symptom, however I am unsure about an ache that develops by fighting the urge to give into the weakness.

Any answers from those with relevant history or knowledge will be appreciated. And before anyone says it, yes I know I will get my answers at my EMG.

Speaking of, for anyone in Kent UK, my EMG is being undertaken by Dr Alistair Purves on the NHS, he is a specialist in EMG and Conduction studies and is based in Kings College London. However I do not think he is a neuromuacular specialist so I expect the report will be sent into someone else. Does anyone know if I can request a copy of the report at the conclusion of the test and take it home with me, and if I do how much information would I personally be able to glean from it?! I ask as I will have waited nearly two months from the date the neuro referred me for the EMG, and I am loathe to wait a similar amount of time for the results!

Once again, thanks for your time.
 
Again worried you talk 'feeling' rather than 'failing' - you 'can' but you 'feel' ... = NOT ALS :)

Wait now til after your EMG
 
In the U.S., I always ask for a copy of my EMGs. It may take a day or two, but I always get them. The neuro doing or analyzing the tet will have a short summary of what he thinks the test means.
(I am told this is just an analysis of this one EMG and is not made in the context of all my other EMGs, clinical exams, etc.)
Your neuro is the best person to explain the results to you, but if you feel abandoned and confused, try the Forum.
 
Dr Purves is a neurophysiologist so EMGs ( performing and interpreting) are his specialty it would depend on the professional protocol there whether he will tell you what he found or if it must come from the ordering neurologist but as Dusty says you should be able to request a report to be sent in a reasonable amount of time. The EMGs I have had the raw data is written by hand and later put into a typed format followed by a conclusion so I would not expect anything printed at the time
 
Many thanks for your replies.

Yes affected, I am feeling more positive than previously as I have been kind of waiting for my first "failure" but it has not occurred as yet, and as my first symptoms occurred in mid autumn I am taking this as a good sign!

Appreciate the advice Nikki and Dusty, I knew that the Dr who will be undertaking the EMG would be able to interpret the results, but having some experience of the procedures in place at the NHS I expect the results will be sent to my original neurologist. If all is ok I would expect to then hear from him, but in the event that it is not clear cut good news I think he would then forward the report onto the neuromuscular specialists at Kings College in London. As you can imagine this process could take quite a while, so if I have some raw data in my hand early on it would be nice to know that someone could give a very basic, non-committal assessment of it.

As a final question before I patiently wait until next week, will an EMG show up a problem like MMN? I don't think they will be doing an NCS at my appointment, or at least that isn't mentioned in the appointment letter, and I wondered if an EMG would register this issue if it is there?

Thank you again
 
There are things seen on EMG in MMN yes. I would not be surprised if there is an ncs too in most places they seem to be done together.
 
Thanks for your reply Nikki. I will wait and see what the appointment brings next Thursday.
 
My EMG was conducted at Kings, I got patient liaison services to email me a copy of the report shortly after, however that was after I was informed later on the same day that I had the EMG that I indeed had ALS (MND) so don't know if that made a difference particularly as the EMG report concluded that they were looking at the results as being indicative of ALS.
 
Thank you for your reply Janbrit.

My test is being done at Medway Hospital, the neuro centre is a tertiary of Kings and the neurophysiologist conducting the test is based in Kings.

I expect the results will be sent directly to the general neuro @ medway or the neuro muscular centre at Kings ( dependant on the results ) so I doubt I will hear the same day, especially as my test is at midday. That being said you never know, and to be honest if I do hear the same day then I doubt it would be for good news.

Have to admit to being pretty scared, especially as my symptoms seem to be progressing quite quickly. I am going on my own as my wife is working, mum looking after my daughter and my dad has got dementia so prob not the best person to take, however I shall be asking the DR undertaking the tests as many questions as possible to try and get him to advise as to what he thinks the results are pointing towards.
 
I have today had my EMG. My left thumb, right calf and thigh, right bicep and face ( 2 places checked ). All clear apart from fasics! I did mention my left calf as that was the (seemingly) most affected area, but the Dr advised that he didn't need to check it as he had seen enough evidence from the other areas to, in his opinion, rule out MND. He did say that I had a lot of fasics and some weakness so something is going on, but I shouldn't at this time worry about MND!

Thank you all for your support, at the very least this period has given made me aware of how horrendous MND is, and the suffering those affected by it go through, so as soon as whatever is wrong with me is sorted out I shall work out a way to contribute in some way, maybe try and get fitter and do a sponsored run! For those of you affected you are most definitley in my thoughts, and I hope for a speedy cure. To the other DIHALS, read my threads. Weakness, twitching, atrophy, tremors, brisk reflexes, I had them all. And it's not MND. I've spent the last 6 months convinced I had something which I didn't, and my life suffered because of it. I suggest you don't so the same. Take the members advice!

Goodbye and good luck x
 
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