Did you have any Spinal Surgery prior to diagnosis of ALS?

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sfcharm917

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I am new here, still trying to navigate this forum. I am interested in hearing from anyone diagnosed with ALS after back surgery. I have had four spinal surgeries and understand that over 50% of people who have Cervical spinal surgery end up with ALS. I have been evaluated twice in the last ten years for it and both times I was told I didn't have it.

It's happening again but this time, I am having major symptoms that I did not have before. Trouble swallowing, drop foot. The other times I had body wide fasciculations. I was found to have lyme disease and treated with IV Rocephin and the twitching ended but not for about a year. I do have twitching now but not body wide. I do have wasting all over. Mostly my feet, legs. I have weakness today that I never had previously.

I live in San Francisco and will be evaluated at the ALS clinic at UCSF and the ALS clinic at Sutter Health. I have been to both. I am quite worried as I have four siblings who all have had back surgeries and suffer from the similar symptoms. I would appreciate it if you would let me know if you have had any back surgery. I've had cervical and lumbar surgeries.

Thank you and I look forward to being here. I am just noticing that I did join here back in 2017. I wonder if the moderator would let me know if I could look back on my previous posts for information I may have forgotten. Thank you.

Barb
 
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Nikki J

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I think you have the statistic backwards 50 percent of PALS have a complications of cervical spine disease according to this study Amyotrophic lateral sclerosis: frequent complications by cervical spondylosis - PubMed which was small so it may not be generalizable to the ALS population as a whole
Anyway that does not mean the reverse is true and I do not think it is? Do you have a source?

ALS and spinal disease tend to affect similar age groups. It is sadly true that some PALS get surgery because their symptoms get attributed to spine issues when an mri is done. careful evaluation should prevent this. It can
also happen that surgery is needed but ALS coexists. If you went to the ALS clinics before it sounds like your doctors did due diligence then

your post count is 1 so you do not have old posts under this username

please let us know what happens after you see the neurologist
 

lgelb

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With no family history of ALS, there is no reason to suspect you and your sibs share any genetics related to ALS, especially since none of you has been diagnosed with it, but it's more possible that you share some kind of orthopedic variant given everyone's surgeries.

As Nikki notes, cervical and lumbar spine issues become more common with aging anyway, and so does ALS. So it's not surprising that there's some overlap, but no causal mechanism either way.
 

sfcharm917

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Thank you Nikki and Igelb for getting back to me. I am still trying to find my way around this website. Nikki I made a mistake, it's not 50%, it's 5-15% of ALS patients have had a cervical surgery. I came across several articles that say cervical surgery mimics ALS. I saw my neurosurgeon this week and he is recommending that I to go to the ALS clinic to be evaluated. There are two in San Francisco and I have an appt. at one and waiting to hear on the other as well. As I said I've been to both over the years but never had so much going on while at those visits. My last visit was in 2017. The neurosurgeon noted wasting on both hands. I also put a call into Stanford to learn more about their clinic. They do research as well and I came across many articles about their ongoing research on ALS. I see the neurologist on the 16th so I will know more then. I do have another question do many people with ALS suffer with pain? Thank you both again for your input, it is very much appreciated.
 

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10 years is a long time to be chasing a terminal illness diagnosis. Do you have any idea what the barrier is to you believing the doctors?
I can see you have had some serious issues as you have had surgery, but there is no actual link between spinal surgery and ALS. Except as Nikki suggests, age.
I hope that when you see an ALS specialist this time you can really get this sorted and either be diagnosed (seems incredibly unlikely) or put this to rest for the last time.
Your question about pain is answered in the following post, give it a good read while you wait for this next appointment and hopefully it will help.
 

sfcharm917

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I honestly haven't thought about ALS since 2017. I just had some serious issues show up on a spinal MRI done in November and my neurosurgeon suggested I rule out ALS. I take this matter very seriously.
 

lgelb

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Barb, we're at a disadvantage not knowing what the concerning MRI showed --note that MRIs are used to rule out other causes, but not to diagnose ALS per se. I would also add that Rocephin can have its own after-effects, like any other IV antibiotic, as can advanced Lyme (as I presume you had if Rocephin was necessary).

To answer your question, ALS onset is not generally associated with pain, since it does not affect sensory nerves and the pain of lack of pressure relief and immobility comes with immobility, not wasting or twitching.
 

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I had a bad lumbar disc for years. The VA sent me to physical therapy in 2014. The therapist gave me the wrong exercise because I never got an x-ray. That resulted in a crushed nerve and foot drop in my left leg. After they debated the issue for over 9 months, they authorized surgery (4 levels fusion L3-S1). Meanwhile, they figured out that a 1979 injury in the Army was left untreated for 30 years and developed into mild scoliosis with 3 curves in my spine. I think the crushed nerve was what triggered my ALS because through the summer of 2015 while they were debating what to do, I began to get fasciculations.

By 2017 I sought a non-VA Neurologist because the VA was not interested in figuring out what was causing my fasciculations and progressive weakness in my left and now right leg. The new guy started tests, and over 2 years had ruled out almost everything else. Then they send me for a full spine MRI (fall of 2018) and the non-VA radiologist pointed out that I had issues in my cervical spine, which netted me a trip to see an orthopedic spine surgeon. The Ortho-surgeon said I did not have ALS. He said I had Cervical Myelopathy, which was common in men over 55 (me). So I agreed to a 2nd spine surgery (5 level fusion C3-7).

The diagnosis was based on solid info because the MRI showed that there was barely any room for spinal fluid to move through my cervical spine, but in the end, it was a misdiagnosis because it did not slow or change my symptoms at all. In the fall of 2019 was my 1st diagnosis of ALS. So many different conditions can mimic ALS and until all of them are ruled out, a professional medical caregiver cannot rule in ALS.

The misdiagnosis rate for ALS is under 10%. That is when they say you do have ALS but are in error because you do not have ALS. The misdiagnosis rate for not having ALS is around 40%. That is when they say you have something else, but it turns out that you actually do have ALS. Remember that ALS is a progressive condition, but it also has plateaus that may last for weeks, months or years without progression. At the same time, something like cervical myelopathy can also cause intermittent symptoms, so unless you remove the cause of myelopathy, you may not get a proper diagnosis.

The underlying interest though is that a professional's job is to figure out what is going on that causes your symptoms. Being educated on the issue is your job. Ask questions.
 
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Nikki J

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Do you have a source for that 40 percent?
 

johnny5

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1) Misdiagnosis of ALS | Understanding Why

  • 10-15% of cases are false positive, which means patients are told they have ALS, but their symptoms end up being due to some other condition
  • Nearly 40% of patients are false-negative, meaning they are diagnosed as having some other condition before ALS is confirmed
Patients with Kennedy’s Disease or Multifocal Motor Neuropathy (MMN) may sometimes be diagnosed as having ALS, since the diseases have similar symptoms. However, unlike ALS or Kennedy’s Disease, MMN is not life-threatening. Listen to one patient’s traumatizing story of being misdiagnosed with ALS and how it impacted his life.

Misdiagnosis essentially means delayed diagnosis of the actual condition and can lead to worse prognosis (patient’s outcome) because the disease would have progressed in the interim. ALS is commonly misdiagnosed as cerebrovascular disease, cervical myelopathy, vertebral disc herniation, radiculopathy, neuropathy, and myasthenia gravis. Misdiagnosed patients may endure surgery or treatment for the wrong diagnosis that can lead to unnecessary harm.

2) What to Expect After an ALS Diagnosis

Up to 40% of ALS patients are initially diagnosed incorrectly before ALS is confirmed.



I found several more that was located in professional journals dating back to the 1990s when I had access to the College Library system.
 

Nikki J

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Thank you.
a few thoughts. I think diagnosis is much better than it was in the 1990s Yes I know your linked article is 2020. I can see if you count from initial presentation that rates are likely that high. We all know many people get sent to PT , orthopedics rheumatology and more initially. I think once you get to a neurologist the rate drops considerably and even more when you get to a true ALS specialist. It isn’t zero even then but I think there are not many actual misdiagnoses at that point. There are more delays than misdiagnoses in clinics probably- people who don’t meet full diagnostic criteria who they follow

I realize your own path was difficult but I believe exceptionally so and not the norm
 

Clearwater AL

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Here's the bottom line for all... if you receive a CONFIRMED diagnosis
of ALS your medical record WILL have the diagnostic code for ALS.
(Required/qualify for any possible benefits/assistance).

Everything up until then is a work (diagnosis) in progress.

Without that diagnostic code... your are not yet a PALS.

Mods... do you agree?
 
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affected

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I think Nikki could be spot on.
You could say my Chris was 'misdiagnosed' because our GP had no idea what was going on and we were seeing ENT and Facio-Maxilliary surgeon and dentist for months.
But once we got to the correct specialty, we were correctly diagnosed very fast.
I have never thought that I would count doctors in other specialties trying to figure out what was going on as a misdiagnosis. I would only have counted it that if the ALS specialist and Speech Pathologist had been saying it was something else entirely.

That aside, you have been chasing an ALS diagnosis for 10 years, and that is a very different scenario. I'd be shocked if you were misdiagnosed by an ALS specialist and still alive 10 years later and heading to prove them wrong. Even if you say, oh but 5 years ago when I thought it was, turns out it wasn't, but this time it will be ... I'd say it will most likely be like last time.
I certainly hope so for you.
Update us after you have your evaluation next week for sure.
 

sfcharm917

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Johnny, thank you for all the information you shared. I really appreciate it. I will know more in the next few weeks after my appt. with the ALS clinic. I've spent the last week looking over this forum. I won't be back as I'm not at all comfortable here. I came here because I have great concern that I could have ALS. I shared my story and was admonished that I was chasing a fatal disease for the last 10 years. I was only doing what new people here do, making inquiry and just looking for some answers. I wish you all the best Johnny.
 

Bestfriends14

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Barb, you've been here since 2017, so I'm sorry you're not feeling welcome. I think the folks are just ensuring they have all the info so that they can best answer your questions, not to try to be awful. Please do stop by once you've met with a neurologist and update the forum. It helps not only guests, but members, as well.

Take good care.
 
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