VERY grateful for clean EMG yesterday

[seand777]

Hello everyone,

Just wanted to give you a heads up about my EMG at the Cleveland Clinic yesterday. It was normal. I am EXTREMELY grateful for that. I really am lucky compared to most of the people here and that makes me a little sad to even mention it. If I could share this luck and give this gift to others here, I totally would!

It is frustrating though to not have any answers about what is causing my symptoms. Still no Neurological explanation about what is causing the left side weakness, atrophy, fascics, positive Babinski and ankle clonus. I am very surprised that he wasn't interested in finding out why which is my reason for going to the Cleveland clinic to begin with. I went knowing my EMG from 7 months ago was normal and was hoping to finally get some answers. Instead, he just wanted to prescribe Baclofen and wait it out to see what else pops up in the future. What kind of help is that? His arrogance and lack of interest in my concerns didn't help matters. Especially how costly it was to even get there for this appointment.

Are there any conditions that you know of that could cause these symptoms and still have a NORMAL EMG? If you do, please share!

 

[katmomma]

congratulations! That is great news about your emg!

 

[GlenBrittle]

Well, I guess you could say "NOT ENOUGH SEX".

You have a reason to celebrate - go for it and put those symptoms away for a bit.

:twisted:

 

[Moonmark]

That's awesome news! I understand, though, what it's like to have a clean EMG and still have troubling symptoms. I don't really have any suggestions for alternate diagnoses-- that's up to the doctors to decide--but do follow up with your neuro down the road. that's what I am doing, every 3-6 months as stuff slowly progresses.


good luck--

Sandra

 

[Twinsmom]

Congratulations on the clean EMG...I totally get your frustration though with the lack of interest from the "specialists". Time to circle back to your neuro and start the ruling out tests so they can hunt down the little bugger that's causing your symptoms. (MRI, PET Scan, Blood work etc)...Enjoy the good news!

 

[awieleba]

That is good news that they did not find anything that stood out to them. However I do understand having sx and no diagnosed. I am on the wait it out and see as well, and have been for 2 yrs. I had a clean emg one year ago and I go back for my next one in Feb. I am very scared as my sx have progressed and not got better, I have waited a year to let things 'be'. So, I think it will be interesting to go back one year later after 3 clean emgs within a year and half of sx. My problems have been since around Dec 07 that I noted anything odd. Spring of 08 that I went to Als clinic. I will post and let people know how that went for me, for the people that know about my journey with all this.

Did you see Dr. Pioro at CC? I was suppose to go there and see him but felt that the Als clinic/doctor that I go to would have a better grasp of my situation as she had been seeing me from the start and could see progression or anything else.

Yes, very frustrating to travel there and basically be blown off. I think it better to work with an Als clinic in your area that will monitor you and do other tests such as muscle biopsy/spinal tap and all that and learn to know you and your specif sx.

I wish you well.

april

 

[seand777]

Thank you everyone for your support and encouraging words. They are MUCH appreciated!

 

[hopingforcure]

Sean,
I know how you must feel. We have another member on here. She does not post on here much anymore, but I can pass on her experience to you.. She had a smiliar experience at Cleveland Clinic.. She felt not heard, she spent a lot of money and time, and felt deflated. I say good job with the EMG. I think maybe you should find a local Neuro who is a neuro-muscular specialist, or even MND specialist. You have good news, but now you have to find out what is going on.

 

[CB1977]

Hello sean,

That's good news about the EMG. I have had issues for over 2 years now and have been seeing doctors for 18 months. I just had a fourth emg, my 2nd at CC. My first experience there was not a good one. It was very similar to yours. I complained and had a new Dr assigned to me and although my new DR. has a genuine concern, after my last EMG she said she didn't know what I have and didn't know who could figure this out. I to have pretty obvious atrophy and this symptom seems to slowly progress. My only suggestion is to not give up because if it isn't showing on EMG then it's probably not MND which means it's likely treatable and time matters. The wait and see what happens seems to me like what a doctor says when they don't know what else to say. Good luck to you and good luck April with your upcoming EMG. Take care.

 

[rhythman]

GlenBrittle

Every group needs a resident S.A.

 

[AndyDJX]

I'll add my voice to the empathy of those who are without diagnosed and have very troubling but unexplained symptoms. But I think we all collectively recognize that we are very fortunate to have relatively clean EMGs. So while things are not perfect, the clean EMG is still something to be grateful for. Congratulations on that news.