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KANSASTOM

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165
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Learn about ALS
Country
US
State
ks
City
wichita
I have been following Tag's story and I am hoping for the best. I cannot help but to see similarities between her husband and me. My saga started out looking at my lower back condition to explain the atrophy of my calf and the paralysis of my left big toe. At first it was a possible tumor, herniation or bone spur. Several tests later, EMG's MRI's and the rest of the usual tests I had a two appointments, one with a neurologists and one with a neuro-surgeon. The neurologists was first and his diagnosis was ALS. Three weeks later the neuro-surgeon didn't even want to talk about back surgery because of my ALS diagnosis. I have two herniations and severe spinal stenosis in the lumbar region, but no pain in my legs. My question is, does continuity breakdown in the motor nerve cause the atrophy and paralysis? If it was just the discontinuity in the sensory nerve would there be atrophy? It is now a year later from the date of my diagnosis and I am going back to a different neur-surgeon to talk about possible surgery, a year wasted.
 
Keep looking for answers. A friend was given an ALS diagnosed by a top notch neuro and a probable by an ALS Clinic. Atrophy in one calf and foot and weakness there. About 3 opinions later he has no ALS but spinal stenosis. He is mulling over the operation they suggested. Sometimes, more than a second or third opinion is needed.

AL.
 
I agree Al, the neurosurgeon keep asking why I didn't have any pain in my leg, but I didn't. My pain is in my lower back.
 
I too have been watching tags story with interest. When this all started I did have pain and a lump in the right calf and the MRI showed some atrophy. Now there complete atrophy of the soleus and gastrocnemius muscles but now there is also atrophy in the right thigh/hip, buttock and now left calf. I also have no ankle reflex or plantar reflex on the right. They have imaged my lower spine, especially the sciatic nerve so many times and ways but it does not show any compression. I have osteo athritis of the spine and have always asked if this could be the cause and they have all said no. I have had 3 biopsies and numerous EMG's all showing both a "neurogenic and myopathic processes"...which I am told points to having both a disease of the nerves and a disease of the muscles in lay terms. But no firm diagnosis of either, I am told I am a rather unique case. I guess I should count my blessings but it is very frustrating.
In a few weeks I will leave for yet another biopsy and another EMG with another specialist. Maybe they will have some answers.
 
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Hey Tom and Willow..

The only thing Jim and I can tell you is that you need to keep pushing until all avenues have been exhausted.

We were diagnosed in an hour and a half and have paperwork showing that we told this doctor that every symptom started with his ski accident, showing that he dismissed a severe spinal stenosis and a broken back, showing that he dismissed a thoracic herniation, and showing that he took our story and made it his own with this diagnosis. It just didn't seem "right". We also now have paperwork showing several doctors who are refusing to take on our case because of the als diagnosis.

It has felt like we are running in circles and like we were treated with pity as the nutty people who just didn't want als.....gee...ya think? lol! This is until our wonderful GP really listened, and watched, and jumped on our advocacy bandwagon....and of all people...our accountant...shared our story with another of his clients who happened to be the former chair of neurology and is still a practicing neurologist.

Share your story..you never know where help may come from. BE YOUR OWN ADVOCATE! Research..but don't try to talk yourself into a disease! All I can say is that I've learned enough and have sounded educated enough that it's managed to open up a few more avenues for us.

We are FAR from done. They are still cautiously keeping an eye open for "progression"...but at least they are acknowledging that his spinal cord injuries can be causing this and are doing the appropriate testing to see if they can get that fixed for us (building a case for surgery is what we were told). We feel that my husband's issues could have been fixable...now with Dr's refusing to help him because of the als diagnosis...we're faced with potential and very possible life long paraplegia!

Now..with that being said..when are we willing to give up and accept als? Because we are, and I guess anyone who's been diagnosed has to face that moment...but it won't be until we see progression into his upper body that cannot be explained by the segments of his spinal cord that have been injured. No one has been able to prove so far that this is happening...so we're going to keep fighting and if you feel this is in error...so should you...don't give up!

Keeping everyone in our thoughts and prayers!
Tracy
 
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