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BeachBum

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Hi all,

https://www.alsforums.com/forum/do-i-have-als-als/41467-clean-clinical-exam-now-gait-abnormality.html

Above is a link to my story till about May/June 2018. I have no idea what’s wrong with me, so I’m posting here looking for direction.

I have seen multiple neurologists about my symptoms since then. Including 2 neuromuscular specialists and a neurologist at the Mayo Clinic. Each visit is similar, they ask questions about my symptoms then perform a neurological exam. I do not have UMN signs and I can perform each task asked of me. The issue is they aren’t testing where my weakness is: my feet.

I fasiculate below my knees constantly, especially in the arch of my feet. It started in the right, and it’s moved to the left. My feet are atrophied, especially the right between my tendons. This creates weakness inmy toes, especially the middle ones. They feel like sponges with each step I take, providing no force to propel my body when I walk. I will post a photo later when I’m off my phone (can’t attach from here) — I have watched the muscle disintegrate since January. I can stand on my toes but my feet, but not my calves are weak. My peroneous longus muscle in my right foot is a tiny ball where there used to me a long muscle. My calves are small and softer. When I stand, my ankles collapse inward — it feels like I’m holding myself ankles up when I stand and walk. I distribute weight to the outside of my feet. My feet ache constantly, my knee and ankle joints ache badly too. I still get intermittent cold water sensations in my shins. I don’t have pins and needles anymore — in fact I believe what I thought were pins and needles in the past was buzzing. In short, fasiculations, atrophy and weakness — almost completely confined to my feet. I limp when I walk and it keeps getting worse.

I had a repeat EMG last week at Mayo. It’s clean, BUT they did not test feet because simply stated, “abnormalities in the feet are normal”. They tested my shin, my tight and hip along with paraspinal muscles. My CK adolase and pernicious anemia (B12) levels are in normal range. I have had additional bloodwork with abnormalities but I don’t know who to see about them, what type of doctor to see. I had an 80 minute MRI of my lumbar and thoracic spinal regions on Friday. There are issues but I think they are minor. I don’t understand the medical language.

My question for the community is this: where do I go from here? Does anyone have a story like mine? I am losing my ability to walk. Literally. I think I have maybe 3 months till I fit myself for an AFO. I don’t know what else to test for or what to do. A part of my problem is I go to different neuros to get opinions from the best, most experienced doctors I can find — which seems like the right thing to do with one major caveat — they don’t see my progression over time. They don’t watch my feet lose muscle one month to the next. It feels like they are waiting till I can no longer stand on my toes before they go deep down the rabbit hole to find something. But they can’t find what’s wrong. I hang around these forums because I genuinely believe I have MND. Maybe a flail leg or PMA variant. I hang around these forums because everyone sounds like me. A slow moving train where strength and muscle is lost each month all while twitching incessantly reminds me of that my body is under attack.

Emotionally, it’s crushing. My family is scared. I’m terrified. I’m making no long term plans for the future. It’s like someone has vacuumed the joy from life. I’m living a private hell.

Idk what to do it where to turn.
 

GregK

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Which part of "no" is confusing you?
 

Nikki J

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I do think sticking to one doctor would be better. However both pma and its flail leg variant should show on emg. And since I really have/ had both I can tell you it doesn’t sound like my experience.

Find a good doctor you trust and work with them
 

lgelb

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Seeing different neuros who haven't followed you isn't the issue. For example, Dr. X might say your strength in one muscle is a 3 and Dr. Y might say it's a 4. But they will agree that you couldn't stand on your toes, or that you lack normal musculature in your right calf. You might know them for five seconds before they could say that.

Most people here were diagnosed by docs they had never or barely seen before. That's a red herring. The exams and tests show positive results or don't.

So I don't know what really underlies your conviction that you are losing your ability to walk, but what does your PCP say? If there is some unappreciated injury, you might seek a PT evaluation. But if no one else is seeing weakness or atrophy at baseline -- when you walk in the door -- it's hard to understand your terror, and so we might suggest that you seek treatment for health anxiety in that scenario.

Best,
Laurie
 

Nikki J

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Agree with what Laurie said regarding mnd but in deciding what is or isn’t wrong one doctor is best. And that person is more likely than not your pcp
 

lgelb

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I agree the PCP isn't the neurologist -- just someone to go back to if neuro causes are ruled out by the MRI and all other data.
 

Vincent

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So, you've been to 2 neuros and the Mayo Clinic. All said no ALS. Now we are half a year later and you are asking random strangers with no medical training to diagnose you over the internet. Let that sink in for a couple of minutes....... Sounds kind of nuts. That's because it is. Staying on this site is not good for you. People on here are dying. You coming here to ask questions that have been answered by numerous doctors is just plain rude.
Vincent
 

BeachBum

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My PCP and neuro at Mayo see atrophy in my feet — My PCP is the one who referred me to the Mayo Clinic neurology deptsrment. She also ordered a smattering of blood tests and faxed my medical history to the hospital. She suspected a serious problem and admits it’s out of her expertise. Mayo asked to see me the week after she sent my referral. What my neuro did not see during his exam is UMN damage. He said (paraphrasing), “I don’t see UMN damage and strength seems OK but I’d like to do an EMG because feet are hard to evaluate. Standing on toes measures calf strength more than foot strength.” The techs in the Gonda building didn’t test my feet because feet are not reliable. They said a healthy person is as likely to have neurogenic abnormalities in feet.

I believe that neuros, in some cases, take a wait and see approach. All have told me, I want to see you in 6 months.

Btw, thank you all for responding, even GregK — Id say the same thing — “what is this a-holes problem? What’s he doing here?” I don’t know where else to turn. I cannot walk barefoot ever anymore. I wear orthotics to raise my arches. I’m 28. I was a varsity athlete in college and before this started I was weightlifting everyday. Now I can’t walk more than a few blocks. My world has been turned upside down. I was wondering if anyone here heard a story or knew someone in a similar situation who found an answer.

I will post a photo of my feet later so you can see. Still typing this on my phone.
 

GregK

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regarding your concern about your feet not being tested...

please give serious thought to the undeniable fact that those nerves pass through your legs.

consider it the medical equivalent of wire tapping.
 

KimT

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Why don't you see an orthopedist? Maybe looking at your feet from a mechanical position might turn something up.
 

BeachBum

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I attached a photo. My right foot is affected most. There's really not a lot of muscle there anymore: between the tendons, in my arch and on the bottom of my foot. My toes are curling, esp when fully rested. My left foot is starting to thin now.

Does anyone's foot look like this? Has anyone had a similar pattern of atrophy?
 
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codyclan

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Greg asked you to not post pictures of your feet as that does nothing for us and no one here will be able to determine atrophy from a picture. You responded that you 'get it' and then you posted pictures of your feet. Multiple neuros have told you no ALS. Not sure what you're looking for here, but this isn't the right forum for you. Time to work with a pcp or doc to determine the cause of your problems. Time for you to move on and you should also address your anxiety.
Best wishes,
Tracy
 
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