Possible ALS

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natick77

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Hello,



I am a new member and have been reading the threads in this Forum for the past couple of months. I would like to explain my situation and perhaps your expertise can help me. Thank you in advance.



I have two concurrent health situations happening and I have two different opinions coming from Back specialists/surgeons and a neuromuscular specialist. I should say that I am seeking a 2nd opinion from a new neuromuscular specialist.



I am 62 year old male, back in February I started experiencing sever sciatic pain down my left side. I lived with it for several weeks and then decided to seek relief with a cortisone shot. The next day my pain was gone but I noticed my left foot was numb and stayed numb. Several days later I developed (what the doctors are saying) a mild drop foot. It is not mild to me, as it does make walking a lot more difficult. I still have it and today is 8/11.



Working with my pain doctor, he ordered a lumbar MRI and an EMG. The EMG showed issues in my lower left leg as well as my right. The left worse than the right, hence drop foot. My primary back specialist reviewed the MRI and EMG and immediately told me that I needed a back fusion at L5-S1. I had hoped for a minor disc scraping procedure, but he explained that I have spondylolisthesis in the L5 S1. This is basically a small fracture where the disc moves forward and pinches the nerve. He told me that the fusion is the only surgical option for me and that it would relieve both sides. I should say that I have no real pain in my back or right leg besides the previous sciatic, which I think is returning. (it is an ALIF procedure, he said it is the same one that Tiger Woods most recently had)



So, in June I was set up for a back fusion on July 7th. This was rescheduled by the surgeon to later in July and I then cancelled it as I try to wade through the mess.



Second issue: Back in January I noticed that I could not apply enough pressure with my right thumb to clip my nails. I attributed it to old age but eventually went to a hand doctor in February. She basically told me to live with it but several weeks later I went back to her. She noticed muscle atrophy between my right thumb and index finger, so she sent me to a neurologist. He conducted an EMG and expressed concerns and mentioned ALS (this is when I found your Forum). But he ordered an MRI of my neck to eliminate a pinched nerve. It came back clean and I was referred to a neuromuscular specialist. I should mention that this neurologist looked at my back xray and expressed his opinion that I did not need a back fusion and that a lesser procedure would likely take care of my back/drop foot.



I immediately set up a 2nd opinion with another back doctor and he said my situation was fusion ‘101’ and agreed with my 1st back doctor. I mentioned the comment from the neurologist and he basically said he should stick to what he knows.



So last week I visit the neuromuscular specialist (NS) and he listens to my story about the back and hand and reviews the EMGs on my arm and legs. Before he conducts his evaluation, he advised me against the back fusion and said ‘a pinched nerve would not affect both legs’. He then does his evaluation and does another EMG on my arms and legs. Long story short, he orders a blood test and tells me I have MMN or ALS and prescribes Riluzole. He says he is hoping it is MMN and also said he is encouraged that things seem to be progressing slowly. His comments on the EMG say ‘Two areas of spinal cord involved’ & ‘ Some reinnervation – suggests a slower process’. So, he is dismissing the disc problem and attributing the drop foot to MMN or ALS.



Next day I text my 1st back doc and he expressed what is pretty much outrage at the NS, he wrote; ‘ This person’s lack of knowledge of how common spine conditions affect nerves is alarming’. At this time, he is asking for the NS’s records and is going discuss this with the neuro docs in his network and then get back to me. Meanwhile I had a telemed call with my 2nd opinion doc and he pretty much said the same thing, that the NS’s statement was wrong. He did not say it was not ALS, but he reconfirmed that the only procedure that would help my back and hopefully drop foot is back fusion surgery.



I am waiting on the blood results, appointment with the NS is 9/2 and I am asking my PCP for a referral for another NS, hopefully at Barrows here in Phoenix.



It is of course my hope that my drop foot is a direct result of the L5-S1 condition. I decided to post because I could not find any threads that talked about their condition starting with sciatic, developing drop foot and then being diagnosed with ALS.



I should mention that I can still tie my shoes, button shirts although it is more difficult. I can walk on my toes, but the heels are harder because of the drop foot. I have always had muscle twitches all over my body, but they are definitely happening more, and I want to attribute that to stress but the NS was certain it was part of the MMN/ALS. I have a read a lot about BFS and also have read the moderator comments about not worrying about the twitching.



Thank you all. You have a great support system here
 

Nikki J

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I am sorry for all you are going through. I think you are doing the right thing in not having surgery at this time and in pursuing a second neuromuscular opinion. Barrows is an excellent idea

drop foot is a common start to ALS Sciatic pain not really but you could have 2 things going on.

you haven’t ask for advice or other information. We will hope that it is MMN or that the surgeons are right. At the top of this subforum there is a getting a diagnosis sticky and in resources you will find one on second opinions which is similar. You might find them helpful in preparing for your next visits. Please do let us know how things go

best
 

natick77

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Jul 6, 2021
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Learn about ALS
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00/0000
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US
Thank you for the reply Nikki. Yeah, I just got contacted by my PCP this morning so a referral to Barrows will be forthcoming soon. It is a tough decision for sure, waiting for the next symptom or getting the surgery done to see if it helps. But I will wait on the Barrows opinion and go from there. I will be in touch with updates ...
 
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