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Amyotrophic Lateral Sclerosis (ALS) Message Board


Amyotrophic Lateral Sclerosis (ALS) Board Index


[QUOTE=ColorPink;5139878]I had my EMG/NCT done and was seen by 2 new neurologist back to back. I am very happy that I do not have ALS!! I am lost to where I go now. I was diagnosed by a neurosurgeon and a primary care doc with ALS because of MRI and symptoms prior to EMG and was not going to accept the diagnoses so I went for a second opinion. Now I am completely lost. I was praying for an easy fix. (Anything but ALS is great! Now its a mystery) Neuro 1 said I may have a syndrome that hasn't been discovered. Neuro 2 says my brain isn't sending messages to my body. Both say I have gait abnormalities,weakness and both sent me to physical therapy which I scheduled immediately because I can no longer walk without a walking devise. I also have to go get a swallow test-speech therapy??(say what) They also suggested to go see a therapist to cope. I have not had a blood or urine test since the symptoms struck about 5 months ago and since then I have a drop foot and can't use left hand either. The doctors say that there is no pill or surgery to fix me. I asked if they needed to do more tests and they just frowned at me and said "we are sorry, there is no need for these tests." I was told that the physical therapist will either give me brace systems, see me once, or many times. Can anyone tell me what's going on? Do they just think I am nuts because I refused to accept ALS and am I now possibly considered a difficult patient? I am so lost.



Thank you for reading. Be harsh if you must! I am willing to take any opinions, thoughts, or suggestions...good, bad, or ugly.:-)[/QUOTE]
Hello so my husband was diagnosed with als about 6 months ago. we had been seeing doctors for an apparent balance issue due to an irregular gaited walk. Then came muscle twitching and muscle spasms. He has had all the mri's, c-t scans, x-rays, blood work, urinalysis, and even hair analysis. The hair analysis shows high levels of heavy metal toxicity. At first the doctors said he had a narrowing of the spinal canal. They didn't think this was extensive enough to produce the severe symptoms he has so they dwelled on...so then it was MS and that was disproven by the proper testing. Now since he had the EMG the doctor labeled him with ALS just because he was getting confusing or delayed messages to his nerves. So we went through the whole roller coaster ride of accepting the disease they had labeled him with, now that we have had time to deal with the heart breaking news of the doctor telling him to go home and get his affairs together because he has 1-3 years at best. We are now ready and have been looking back through all the medical reports and translations of the tests. We found the fact that he has narrowing of the spinal cord in cervical, thorasic, and lumbar narrowing. We also found in our digging that narrowing of the spinal canal can cause the symptoms of numbness tingling muscle twitching, trouble walking and in the lumbar and thorasic can cause also loss of bladder and bowel function. So are doctors so synical that they cant imagine that it could just be the narrowing of the spinal canal and not als. We also know that his sister has had surgery to correct the narrowing of the spinal canal and just found out that his cousin is having the same procedure done but with a ruptured disk and a tear. We are ready to go back and get a third opinion at this point. I don't understand why they wouldn't at least try the surgery since there is really no test that says ALS is the diagnosis because it is just a guess from the tests and symptoms on the part of the doctors. So instead of giving you hope they send you home with no hope and a label and date of death. I say a prayer for everyone out their right now that may or may not be wrongfully diagnosed with ALS and is dealing with everything that we have. If you have any input it would be greatly appreciated.

From a Very frustrated and scared wife!
cdilley





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