another EMG, concerned

[GunnyH]

Hi all you wonderful and supportive people in here!
I have posted long time ago and have been in limbo for more than 2,5 years. Its really a hard time and I am progressing slowly and my symptoms and weaknesses are never ever «taking any break». I do have symptoms now in limbs and also bulbar, but still no final diagnose. I did a new emg in november and the physician performing it said after finished and before sending me the report that she could still not confirm a diagnose but «if it is mnd we are ending up with it is going very slowly». Og course I am still very very concerned and as far as I can see out of the emg report there are several abnormal findings. I would very much appriciate if there is a person in here who are good in reading these emg results... can I Mail them to someone?
All the best and I am looking forward to hear from you.
Gunny

 

[Nikki J]

Better if you remove identifying data and post Please include the charts with the numbers and the original summary even though I imagine it is in Norwegian? If you wish to translate too that is fine. If you go “ advanced “ with your post you should be able to upload attachments

 

[GunnyH]

Thank you and I hereby try to attach this report.. is this readable?

 

[Nikki J]

It is. Thank you. I really don’t see anything that makes me think ALS is in your future. I hope your doctor can figure out what the problem is!

 

[KarenNWendyn]

I looked it over too and agree with Nikki. I don’t read Norwegian, but the EMG portion showed essentially normal muscle activity. What few abnormalities that did show are so minor, and would not suggest ALS/ MND especially given the length of time you have had symptoms.

 

[GunnyH]

Thank you very much for quick answer! I would love to be able to think as you say but its too bad I dont manage that too well as long as my condition slowly worsen and the doctors dont find any diagnose… with all your excperience do you have any advice which track to follow? My current situation is as following:
-muscle cramps in legs, back, stommach and arms, fasciculations in foot, in between thump and «pointingfinger», in face... cheeks, around lips and around eyes, stiffness in left leg and my left foot has weakness and giving me trouble in walking... Its as the weakness force me to slow down and walk really slow... cant hurry, having problem swollowing and caugh alot while eating and after eating, toungue fasciculation and a dry feeling up in the palate. I have a horse voice and have to consentrate when I articulate. I have brisk reflexes, clonus in both ankles, these smaller findings no emg and they have increased since my first emg 2,5 years ago, my spinalcord has an inflamation, I have visible athophy in legs, back, hand and face.... all together this is a whole lot and it gives me worries... I know you are not doctors but if you have any good advice what more to look for I would appriciate that. My mind is still set om ALS and thats no wonder with all these things put together. Thank you again and I will be happy for more thoughts. All the best to you and warm greetings from Norway

 

[Nikki J]

You received opinions from the 2 Norwegians centers Laurie pointed out? I know you went to one. If you have not visited the other I would suggest that. I also suggest an open mind. Always the question is what is wrong not do I have ALS. The odder your symptoms the more important it is not to limit the field of inquiry. You had , if I recall, an abnormal spinal tap Perhaps that should be re explored. There are many strange neurological syndromes. I am sorry you are still in limbo. However you asked our opinion on the EMG. It doesn’t look like ALS is all we can say.

 

[GunnyH]

Thank you again Nikki for such a qiuck response! And I do apriciate your opinion om my Emg and yes I have been to two hospitals. The hospital I belong to will not « let me go» and Ask me to come back for followup in 3 months, but they are not exploring my spinaltap any futher other than concluding I have more than 10 «bands» which point at an inflamation of a kind... I am not satisfied that they dont look further. The waitinggame and limbo is psycological hard to manage over this long time yes.
All the best!!!