Worried now it is

[thatscooper2u2]

Hi

I posted a month ago and took your advice and layed off DR Google and went to my appts. I went to the specialist today and my EMG was abnormal in both arms from the elbow to the hands. Over 9 needle insertions done in each arm.

The doc says now there is concern/worry based on this and has ordered blood tests to try and further rule out what is mimicking ALS based on the EMG test.

He did say that I has no other symptoms and I would be the first just to present with my arms only being the problem and get an ALS DX. He seemed pretty sure I didn't have it when I had my consultation a month ago and now has worry all over his face.

What else could this be if not ALS with a bad EMG and abnormal in both arms?

I am trying to stay hopeful until my results of my lab work are back in a few weeks but I am truly now scared.

Help, please? Tell me what else this can be...

 

[Nikki J]

I am confused. This is the same neuro as last time? What happened to going to Dallas? You need an ALS specialist. There are many things that cause " bad" EMGs. Do you know in what way it is bad? And certainly there are a lot of things to rule out if the blood work is not back even if your clinical exam and EMG are typical for ALS ( and it is not clear from your post if they are?). I know this is a tough time but you still have a long way to go to diagnosis from what you have said

 

[thatscooper2u2]

I am confused. This is the same neuro as last time? What happened to going to Dallas? You need an ALS specialist. There are many things that cause " bad" EMGs. Do you know in what way it is bad? And certainly there are a lot of things to rule out if the blood work is not back even if your clinical exam and EMG are typical for ALS ( and it is not clear from your post if they are?). I know this is a tough time but you still have a long way to go to diagnosis from what you have said

This is the als specialist in Dallas. He said the emg is suspicious of Als and came back abnormal in both hands from my elbows to hands. I didn't know what questions to ask other than do you think it is. His response was he was now concerned as the emg definetly showed abnormalities.

 

[Nikki J]

I am sorry. When do you go back to be seen again? After the blood work is back? When you are getting ready for that appointment if you post what information you have learned about blood results etc. We might be able to help with a question list
. I am somewhat confused by the comment about being the first to present with arms only that he made. If he is a purist and going by criteria signs in only one area are termed possible ALS but the presentation of both arms ( or both legs ) is only a little less common than same arm and leg

 

[thatscooper2u2]

I think he is saying that because I have no other signs except for the arms. I went seeking a DX because of hands curling/cramps, shaking hands, and perceived loss of strength in my hands.

My consult a month ago showed no reflex issues or abnormalities. I think the emg is what caused his statement. He seemed taken aback with the findings and said there is concern and worry but we will run blood tests to see if other diseases can be ruled out that mimic als. He did mention a muscle biopsy or spinal tap but says he generally doesn't run those tests as a standard to rule out? My tests will be back in 3 weeks. I am just not sure what other diseases mimic als with a bad emg specially in both hands with no other real symptoms. He did test my left leg and found no abnormalities. I just hate the waiting but no matter what I am waiting for he did say it's motor neuron so it cant be good?

 

[thatscooper2u2]

To add. He said he never had some one present to him in the manner I have and be diagnosed with als. I think the normal exam and bad emg have him stumped And also concerned. What questions can I ask about the emg itself that makes them say it's abnormal? Should I just get the report and share here?

 

[Nikki J]

Oh it makes more sense that is the particular presentation. And obviously a normal exam can only be a good thing.
In general we don't interpret EMG reports as that is up to your neurologist but if you got the report and wanted to post it maybe it would put things into context a bit and we could help you formulate questions. Quite a few of us have had spinal taps en route to diagnosis not so many muscle biopsies so maybe that is a hopeful sign he is looking elsewhere and certainly the bloodwork not being back should give you some hope as well

 

[thatscooper2u2]

I emailed the doctor and he said nothing more then my results were in the setting of ALS and suggested I could have a muscle biopsy in the mean time if my worry was so overwhelming. My test results should be back in a couple of weeks, I think they are trying to see if this is MMN or something that mimics ALS at this point.

Thank you Nicki for listening and talking with me. This is so scary and I know you understand all of this. Trying to remain strong.

 

[Dusty7]

On October 3, I answered your last thread:
"What did your 'questionable' EMG say?
How many muscles were tested? How many showed insertional activity or fibrillations? Fasciculations? Which ones?"

If you don't care enough to answer, then neither do I..

 

[thatscooper2u2]

I had 18 tested this past week. I did not answer because I had a repeat emg. He has not shared the report with us yet. Just says it was abnormal and falls within the setting of ALS. I don't know why I am not being told more than that. That's what makes it worse I think. I hope to get the report this week so I can share more from this second emg.

 

[gooseberry]

If bloodwork was.run, you should get a copy so you know exactly what was run. It will help to ask your doctor what he is running tests for, what he is ruling out,etc.

 

[thatscooper2u2]

He is running blood work looking for mimicers of ALS to try and rule out that I don't have it. The EMG is abnormal and shows ALS as a concern now. I am praying its something autoimmune or MNN, something - anything other the ALS or PLS.

In my favor and what I hold on to:
Only in my hands and lower arms (bad EMG findings) - nothing found in my legs, no other symptoms anywhere else
Duration, I having been having issues for a few years with shaking hands, cramps and fasculations are going on about 1 year
Strength in hands has slowly been getting worse over the past two or three years
I have one cousin with ALS (half cousin) other than that I cant find this in my family anywhere else

My belief that this is not my Journey. I am here and I don't want to be, I don't want to upset anyone but know some of the experts here understand and can give me guidance. I feel the support of all of you and I thank you for listening to me.

 

[skipper66]

My dad goes to the ALS clinic in Dallas. What is the name of the Dr. there who you are seeing please?

 

[thatscooper2u2]

Dr Heitzman.

He doesn't say a whole lot, I think because my anxiety levels are soooo high at this point.

This is such a scary thing to have over you and not know. Even with the blood work coming back, which I hope they find something there, but if they don't, the road I think may start getting narrower.

I know there are a lot of things that mimic ALS, I just hope its something in that category considering the bad EMG (he isn't saying what about it was bad just that it was in the setting of ALS- again I think even after asking more questions he thinks my anxiety levels are too high right now- whose would not be I wonder to answer any more of my questions until I go back on 12-1-2014).

Thanks for your reply, appreciated that you are concerned.

 

[Nikki J]

It is hard to wait for the tests. I had them too even with my known gene defect. I can see my results online and checked every day to see if they were back. We do understand.
My test for Antibodies seen in MMN took a full three weeks I remember. Try to focus away from this. I know you are understandably scared but worry never helps as you know! Try to keep busy with fun things
Will think of you on the first!