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No muscle biopsy

Hi Guys Went to my ALS clinic and asked for a muscle biopsy My neuro Say if I thought you didnt have ALS I would give you one, Let me give you another emg and if it is still ok I will give you a Biopsy He said A emg is a better test then a Muscle biopsy because a muscle biopsy is given if there is a muscle disease which I know you dont have ,like myopathy It doesnt really show nerve damage like EMg does
So now I am going to make an appt for a EMG.
Oh by the way he said my arm weakness is worse which I knew but for a person that was seen 9 months ago ,he thinks my progession is not really that bad. My swallowing and speech is the same and my legs are only slightly weaker in the ankles.
I asked him why if I had bulbar onset Why am I still here. He explain the reason people die quickly with Bulbar onset,is because those people usually die from pnuemonia from aspiration or choke to death because of trouble swallowing. He read in a text they some bulbar patients live very long if they dont run into problems with choking and swallowing because the disease doesnt move to other areas as quickly. I dont know it he was blowing smoke up my a--. Any way he calls me lucky. Yep real lucky! Who is he kidding. I keep telling him what if you are missing something.He said you saw 5 neuros who said ALS,But that was after 5 years, I said. I really think they dont really listen.
Thats my new story Stay tune Pat
 
Dont over do with the exercise Its not good You will pay the next day. Pat
 
Well, Pat,you must be so frustrated with all the years of this. It seems really unfair that any doc would deny you any test you ask for. What skin is it of their neck? Your the one suffering and their the ones that can say you are lucky and no need to do a test. it just makes me so mad. In my opinion, take a woman ill like you, you deserve whatever you ask for and whatever they can do for you. I understand the biopsy doesn't show nerve damage, but he hasn't even seen the nerve damage or muscle damage on emg either. I hope your emg is good, because I want you to still have faith and hope for 8 more years.
 
Rob - I understood that metabolic disease can cause all of your symptoms and that it mimics als. Especially the metabolic myopathies. Are you being treated for it?
 
ltr said:
Rob - I understood that metabolic disease can cause all of your symptoms and that it mimics als. Especially the metabolic myopathies. Are you being treated for it?

They're still trying to figure out what the metabolic disease is about but both OHSU & Cleveland Clinic has said that the metabolic disease is separate and in addition to the motor neuron disease. Cleveland Clinic said that the picture with my reflexes is absolutely indicating upper motor neuron disease (brisk leg & arm reflexes, hoffmans, tremnors and jaw reflex) - esp the jaw reflex they said that was certainly upper motor neuron.

My biopsy had shown neurogenic changes also - dennervation/reinnervation & fiber type grouping.

I was hopeful too that something metabolic could explain everything, but it seems like I'm just lucky enough to have two weird things :p
 
That really stinks. How do you treat your metabolic problems, or do you just have to live with it? It seems that would just be so much to handle with your MN problems as well. The reason I ask is I wonder if my myopathy problems are metabolic related and if some of these als like symptoms are because of it. I really wish your problems could be helped with the metabolic treatments.
 
Well Pat, i'm very sorry....but know exactly how you feel my friend. I just don't have a name to mine.

Today is a horrible day for me...i feel as if i've been run over with a freight train.

Annmarie, thinking of you for monday.
 
I know I have those days as well. Sometimes I have better days than others , when I went to my neuro I was having a good day. Its when you have a tooth ache and the day you go to the dentist its gone.LOL Right now we are getting my house ready for a open house ,. My husband is out there killing himself cutting bushes and cleaning up getting attacked by bees. and I am of no help. I used to trim the bushes and clean up and get bit by the bees LOL But its all on him I feel so bad I am of no help anymore. I am a hinder in his life. Tomorrow he has to wax the hardwood floors and clean up the tile floors and I cant help him I feel so useless I am having a pity party sorry Your friend Pat
 
Pat:

I know it's difficult to rely on others, even when you know they do it because they love you and would not have it any other way. I will keep you in my prayers.
 
ltr said:
That really stinks. How do you treat your metabolic problems, or do you just have to live with it? It seems that would just be so much to handle with your MN problems as well. The reason I ask is I wonder if my myopathy problems are metabolic related and if some of these als like symptoms are because of it. I really wish your problems could be helped with the metabolic treatments.

Well I started going to the doctor a little over two years ago for exercise intolerance & soreness -- presumably this is from the metabolic disease.

The motor neuron symptoms started around 10-12 months ago & now I can't do enough excercise to get that sort of metabolic soreness anymore - just the spasticity pain. So I guess the motor neuron disease has sort of taken care of the metabolic disease in a way :) I am definitely pursuing it though -- they're doing enzyme testing on the muscle biopsy sample they froze back in December.

What are your reflexes like? Brisk just in the knee or elsewhere? How old are you?


-Rob
 
That's interesting, now you have me wondering if they froze my sample. I am really glad to hear that you are keeping on them with your workup. You definitely have to advocate for yourself if you want any real answers. I am 44 and have always been active and young for my age. My reflexes have been very strange. When my right leg weakness started my knee reflex was very hyper, though I saw my gp this time. The next time I had a doc check reflexes they were fine, then the next time they were brisk again. The docs haven't mentioned it to me, I am just going by the changes I noted. The neuro did say that I had a brisk right eye reflex, which, to me was strange because my right side is the side that bothers me the most. The researcher from NIH said I would probably benefit from going to the Johns Hopkins Myositis Clinic. I have to work on an authorization from my ins. co. and get there.....taking my sample with me. O
 
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