question about presentation, please help

[vrt749]

Hello all, and thank you for the information that you have given me. I have been ruled out for just about everything else, Doctor said that my weakness is very focal, which is a little unusuall for ALS (I have the faciculations also). One post on this site says that ALS starts out very focal, then spreads. Does anyone have any thoughts? I know you do not want to take away the "hope" however I was wondering if anyone had any information.
Thanks

 

[wright]

I believe it was one of my posts that stated ALS begins focally. Many times ALS presents with weakness in a single hand or foot, which alerts someone that something is wrong (that would be focal). I also have to add that weakness in a hand or foot could also mean many, many, many other things other than ALS.

I don't think we can really comment on your symptoms because you need to give us more details. When you say it is focal in your arm: do you mean it is in one single muscle or the entire arm or a region of your arm or . . . etc. Do you have atrophy? Do you have pain or tingling or any other type of sensory symptoms? What were the results of your EMG (acute denervation, chronic denervation, etc.)? Any other details would help.

 

[vrt749]

wright

Thank you for responding
I think it was your post that concerned me more. I currently have weakness in one arm with fasciculations throghout my body. The Doctor said all of my results are consistant with ALS. I currently have LMN signs only. I have done most of the test, EMG shows problems ( I know that is not a diagnoses) in some of the muscles of the arm, but not the whole arm, this is why the doctor said it was very focal. He also said it was a little unusual presentation for ALS. They did the blood test for MMN and other mimics, and they have come back negative. The Doctor wants to treat me with a round or two of IVIG, just to be sure they do not miss something, or a deep seated infection. They are also going to do a second MRI with contrast (the first one showed no nerve pinch) and a lumbar tap. I am getting more worried because they have ruled out almost everything else. I am very scared that this is just early als signs, the Doctor has told me he cant diagnoese it yet untill he has all the data. I understand there is no real way to know yet. Since you responded, do people ever have weakness in one arm like this and not progress, without them ever figuring out what it is? I am aware of the motor ueron diease that effects one limb only but does not progress, however I have read that has no faciculations, a younger are (20's) and effects a very specific nationality, which I am not any insight is appreaciated.

 

[wright]

The disease I think you are most likely thinking of is called monomelic amyotrophy which affects only limb and then stops progressing. It is typically seen in younger people and of people of Asian decent but has been reported in older individuals of non-Asian decent. That is certainly a possibility in your case. When did this all start and how has it progressed?

It could also be due to a slipped disk or impingement of a root of the brachial plexus or some weird peripheral neuropathy or a number of other things.

It sounds like you are in good hands with your neuro. Do your best to relax and wait for the new results and hopefully you will have good news. Our fingers are crossed.

 

[vrt749]

wright

I just wanted to thank you for the encouragement. The weakness started in may, but it was signifigant weakness, and it came on suddenly. They have ruled out any pinched nerve. I am just very nervous, have three kids, one has mitochondrial diease, is in a wheel chair, non verbal, ect, so there is nuer muscular ties. They do not think I have any mito issues. I just want to be able to work and take care of my girls. This is a very scary time. Thanks again for your support.

 

[crystalkk]

vrt749

I am sorry for what you are going through. Not everyone has the antibodies for MMN, so the IVIG might work. There are a couple of people on the forum that are getting IVIG treatments and don't have the antibodies and are having a good response. My husband knows someone who has monomelic amyotrophy in the arm and is Caucasian and is around forty.

Try and think positive as hard as it is,