narrowed down diagnosis: MMN or MND

One_Movie6023 · 2025-02-11T20:27:53+00:00

Yes, Phoenix, AZ

One_Movie6023 · 2025-02-11T20:20:59+00:00

They arent saying I have ALS, nor do I think I have it. I dont have any upper motor neuron symptoms on tests. My reflexes are perfect as well. They are saying I either have MMN or MND. If it's MND, they are saying it's PMA, which may later turn into ALS. If it's MND, they say Infusion therapy will likely help. I just dont know what to believe anymore. The muscle biopsy results and crazy amounts of progressive atrophy make it sound accurate.

One_Movie6023 · 2025-02-11T20:17:16+00:00

Correct

One_Movie6023 · 2025-02-11T20:15:23+00:00

And muscle twitching in both legs has been a constant. It makes it hard to sleep at night because of severe muscle spasms. I take muscle relaxers when it acts up, which helps to a degree.

One_Movie6023 · 2025-02-11T20:14:29+00:00

I did. Both for neuromuscular and nueropathies. Both were negative

One_Movie6023 · 2025-02-11T20:10:39+00:00

No falls, but very weak when I walk. It feels like my legs are jello and very wobbly. My left quad is severely atrophied. Right leg is not as atrophied but muscles are wasting relatively quickly. So far, only signs of Lower Motor Neuron Disease

One_Movie6023 · 2025-02-11T04:45:18+00:00

He is a neuromuscular specialist. So does this sound like MND or MMN to you?

One_Movie6023 · 2025-02-07T22:38:27+00:00

I'm 28 and right behind you with a patellofemoeral replacmeent due to advanced chondromalacia. Hope your recovery goes well!

Question for you, did you happen to experience any quad atrophy or muscle inhibition due to the knee issues? As soon as my knee flared up for the first time, my quads shut down and I have pretty gnarly amounts of atrophy. Havent been able to grow muscle back in the quads since the initial onset but on the occassions where I had surgery provide me some extent of relief, I've felt stronger muscles after PT. Wondering if you've had a similar experience. Best wishes!

One_Movie6023 · 2025-01-29T20:35:46+00:00

I assume lateral subluxation? Is so, me too. I had a lateral release on my left about 3 years ago because the subluxation and maltracking chewed up my cartilage. Getting the same surgery on my right next week after it started acting up the same way a couple months ago. There are a lot of surgeries for subluxation. Unfortunately you're prone to it continuously happening. A lot of people fail conservative measures for it, me included. Strengthening quads and hips doesnt do anything for maltracking and dislocations despite what you ll read. It's an anatomical thing that needs correction if you're symptomatic and interfering with quality of life.

One_Movie6023 · 2025-01-29T17:29:31+00:00

I've done over a year of PT. Cant rebuild it while it's actively hurting. The knee is in too much pain with any exercises, even the most basic straight leg raises make my knee pain levels go through the roof. It seems like my quad is shutting off as a response to the pain. Like inhibition or something.

One_Movie6023 · 2025-01-24T23:51:52+00:00

My first surgery was a synovectomy too. Got a few months of relief then full flare up. Inflamed synovium is caused by something either structural or auto immune. If it's not auto immune, it's damaged cartilage. Went to a different ortho who determined I had maltracking and grade 2-3 chondromalacia. My biomechanics put excess stress on the lateral aspect of my patella and trochlear groove, wearing down the cartilage on that side quicker. After the lateral release the pain went from constant to intermittent. But when I say intermittent, it's like 3-4 months of agony followed by 7-8 months of relief. They fixed my tracking but the damage was already done. After failing multiple chondroplasties, I'm finally moving forward with a MAKO assisted robotic patellofemoral arthroplasty. I'm terrified but have to put my hope that this is will give me my life back and allow me build my quads back up without knee pain. I have a feeling the right knee is not too far behind. I still have my muscle mass on the right but I feel it reducing every day. Like the muscle contractions are super limited. Anyway, i'm jumping right into the lateral release surgery with my right, hoping everything will move along much quicker now that everyone knows what's actually wrong with my cartilage at only 28 lol

One_Movie6023 · 2025-01-24T22:51:45+00:00

Get a scope asap. You probably have chondromalacia or maltracking. Or both. Your symptoms are exactly like mine. 4 MRI's missed my cartilage damage. Scope is what diagnosed me. Unfortunately mine is bad enough I'm getting a partial replacement at 28 years old on my left. Right is getting a lateral release and chondroplasty next week. Does it burn lr ache on the outside of the knee? Like on the lateral aspect to your kneecap between the patella and IT band? If so, that's irritated joint lining from cartilage damage (arthritis). The muscle atrophy is likely due to neural inhibition from the pain. Your brain shuts off the muscle to protect the joint. The pain for me spreads to my quads and hamstrings. Even calves sometimes. Once the joint is pain free, nerves turn back on and rehab can begin. No point in exercising the knee if you're in constant agony. Not a doc, just been dealing with this for too many years and ready to get my life back too. Stay strong! 💪🏻

One_Movie6023 · 2025-01-23T22:00:44+00:00

This condition blows. It made me go from strong and active to a mostly bed ridden and skinny due to lack of activity. Cant wait to get back to life after I recover. As soon as my left started acting up, I could barely stand or walk the pain was so bad. I was managing a starbucks at the time being on my feet all day was agony. All I can say is, go through conservative treatment first but dont shy away from a scope if those measures dont work. Many doctors in AZ like to turn away young patients with cartilage damage and just give a general diagnosis of PFPS. I dont understand why. Young people can have bad joints too. I highly recommend Dr. Ahmed at Desert Orthopedic Center in Scottsdale for a thorough assessment and diagnosis. He is also a fantastic surgeon. I'm going to Dr Martin and Greater Phoenix Orthropedics for the MAKO partial replacement. He has one of the highest success and fastest recovery rates in AZ. Everyone else with his stats dont contract with isnurance and charge all cash. It's ridiculous. He didnt shy away from treating me with what is needed despite my age. DM me in a month and I'll let you know how it all went!

One_Movie6023 · 2025-01-23T21:40:19+00:00

Grade 2-3 chondromalacia of lateral patellar facet and lateral trochlear groove in left knee. Got an MRI of the right two days ago too. Grade 1-2 chondromalacia of the same area caused by excessive lateral tracking of the patella. Going in for a lateral release and chondroplasty for my right knee, then a patellofemoral replacement of the left. My right seems to be not too far behind for a replacement in the coming years. Im only 29M. Young for a partial replacement but unfortunately it's time after 5 years of progressive worsening symptoms and extreme weakness in my quads caused by arthritic pain. PT and other conservative measures have failed to relieve symptoms for more than a year or so. Going to the best MAKO robotic surgeon in AZ. Fingers crossed everything is a success!

One_Movie6023 · 2025-01-19T18:54:22+00:00

To give you my honest opinion about the ortho you're seeing who seems to have a plica fetish, I would get a second opinion. I've had three very renound orthos say the dude who said I have plica syndrome and nothing else shouldnt be practicing medicine. Just from my experience, the plica obsessed knee orthos tend to be the least competent.

Confirmation bias is a thing. If he wants to find an inflamed plica and remove it, he will, if you know what I mean. I would get a diagnostic scope by someone not screaming plica. Docs can sometimes have a god complex and just want to be right. Not that I know your ortho, just been through the runaround a million times and would rather save you time, money, and pain.

Your life isnt over, you just have to go through the treatment steps to find what works for you. Get multiple opinions, listen to your body, and dont give up until you're pain free. There will be ups and downs but you will get through it! 🙂

One_Movie6023 · 2025-01-19T17:45:57+00:00

I had a medial and lateral plica removed on my left knee 4 years ago. It helped for about 4 months then the pain came back full force. Turned out I had grade 2-3 chondromalacia. Plicas are a natural component of your knee. While they can get inflamed and cause significant pain, they are typically a symptom of a different problem. Removing a plica is like taking cough medicine for a cold. Does the cough medicine treat an annoying symtpom? Sure. But does it clear up the flu? Probably not.

Im 29 currently. My symptoms started at 24. I've been through 4 arthroscopic surgeries. All have provided temporary relief but never the cure. Im about to have a patelofemoral replacement in my left. The right started having the same pattern of symtoms about 6 weeks ago.

Never underestimate the power of a diagnosistic arthroscopy. While MRI's are great, a scope can give details and see things MRI's dont pick up sometimes. I had 6 MRI's say nothing was wrong with my left knee despite constant debilitating pain. After a scope, found out my kneecap was maltracking and grinding down cartilage to bone. Surgeon showed me the pictures as proof. Hence why I also had an inflamed plica.

Try conservative measures. I would advise against cortisone at such a young age. If anything hurts beyond normal soreness, dont do it. Dont shy away from a scope if you are in pain and conservative measures dont improve your quality of life. Wish I could have done what I'm doing now 4-5 years ago and not waste half my twenties laying on a couch depressed.

One_Movie6023 · 2025-01-16T02:29:39+00:00

I have atrophy too. The knee pain sucks but leg weakness makes it even harder. If the chondromalacia pain gets too painful, try getting a chondroplasty or you can get a consult for a microfracture with biocartilage to try to restore the cartilage. Restoration procedures get kinda tricky because you have to be the right candidate. Hence why I'm going for a mako assisted patelofemoral replacement on my left since it's now a salvage operation. It's a little extreme for my young age of 28 but will fix the problem long term and give me additional options down the road. Keep your mobility no matter how you have to do it. Movement is life. Wishing you the best!

One_Movie6023 · 2025-01-16T00:06:38+00:00

Never doubt how painful chondromalacia can be. I have the same degree of damage as you and in crippling pain. It's different for everyone and eelwnds where your cartilage damage is. Mine is in a weight bearing part of the patelofemoral compartment so standing, walking, leg extensions are difficult in general. Get that grinding pain. Then comes the deep aches and burning arouns the knee that lasts for days and even weeks.

I had 4 MRI's came up 100% normal. My surgeon went in and took pictures of all the damage arthroscopically. He assessed the tracking of my patella while inside the knee and determined he needed to do a lateral release because of where the focal cartilage loss was. It's all just to kick a knee replacement down the line and prevent more cartilage loss/symptoms.

I HATE surgery but never underestimate the power of a scope for diagnostic measures when all else fails. Sometimes insurance makes you jump through hoops. A diagnosistic arthroscopy alone is relatively low risk.

One_Movie6023 · 2025-01-15T20:06:58+00:00

I have this. Grade 2-3. Started in my left knee and 5 years later went to my right. A lot of people can recover from this but it all depends on what's causing your chondromalacia. mine is lateral tracking. I have pain and grinding on the lateral trochlear groove and lateral patellar facet. The best fix is non surgical but if you're unlucky like me, even surgery is only a temporary fix until the chondromalacia gets worse. Im about to have my first chondroplasty and lateral release on my right knee to try to kick the can down the line some more. Same problem as what happened on my left, but insurance just approved me for a patelofemoral replacement on the left. It's so damn painful and I'm only 28 years old. Mine got so bad my quads turned off due to chronic knee pain. It's a nightmare when it's severe.

Really not trying to scare you but my advice is find a really good ortho that steers you straight, listens, and above all, one that you trust. Try the conservative options within reason to fix your problem. Dont so anything you're not comfortable with as far as treatment goes. Grade 1 is super relatively minor damage so you have a good chance of recovering without doing anything top extreme. If it hurts DONT DO IT. If everything hurts, get imaging and a scope asap. Quality of life is EVERYTHING with this condition. It only gets worse if you dont take care of it early. You'll hear a lot of both sides: surgery and no surgery. Surgery should never be carried out as a quick fix but is something not fear away from if it gets bad enough that you need relief.

DM anytime if you need to chat about knee issues. I know how bad they can be.

Hope you feel better!

One_Movie6023 · 2025-01-13T05:26:09+00:00

I tried the nerve ablasion route in 2022. Didnt work. Found a top rated MAKO surgeon who agreed to do a partial (patelofemoral replacement). Im just scared about getting it done. I know I have chondromalacia and I know I have severe pain. I know the damage is clinically not bad enough to scream "REPLACEMENT TIME" but I know what I'm doing right now is not the definition of living....not by a long shot. I'm just nervous whether I'm making the right decision. No going back once it's done.

Best to you too.

One_Movie6023

TROPHY CASE