Could this be ALS?

[csforrester99]

Thank you for allowing me to post. I am a 60yr female. In 2017, I had a torn meniscus repair. I have had years of osteoarthritis, have RA (but not active). In 2017, I had gatric sleeve surgery, to lose weight in hopes of helpung the knees. I lost 100lbs.

Fast forward to 2020. I was attempting to jog. Had started on this a few days before. Pitiful really in my attempt- lol, but was putting forth the effort. I was an advid walker, and normally got in over 10,000 steps a day, after wwight loss. So, back to the jog, I sorta tripped and my knee hurt, and I figured I pulled something. Or my arthritic knees wwre not happy. I saw my ortho, we discussed issues and options. That knee was a hot mess. They gave me a cortizone shot and talked about posdibke total knee replacement. (Thouhh my other knee was already bone on bone) - the current situation knee and leg hurt more. After the cortizone shot my thigh hurt so bad. I never had an issue with shots before. But this was incredibly painful. I saw the ortho the next day- and things slowly settled down. In the folliwing months I did shots to help repurpose the knee, but it did not help. As the 5 months went along, my knee became frozen, like concrete. I had strength, just couldn't bend the knee. I did PT for 3 months, but know change. I had total knee replacement 12/29/20.

The following year 2021- I did PT, 3 days a week for an entire year. My quad didn't fully re-engage. It stayed swollen, was numb and hurt. I complained to to ortho many times... that I could not feel my thigh, much. He said- more PT. PT, said we have a problem, and encouraged the ortho to send me to a neurologist and vascular. I remained unablw to get up from a chair without usibg my arms, and I struggked to go up steps and going down was even worse. Vascular came back fine. In 10/21, neurologist did an EMG/NCS. He did my legs. It showed acute femoral dsyfunction in my surgery keg, and moderate femoral neuropathy in my other leg. My reflexes were fine everywhere. All other nerves- in my legs- fine. He thought lumbar radiopathy.

I sought a second opinon on my knee in Jan 2022. I was told joint looked fine, and I was in the 20% of displeased outcomes- to deal with it, and think twice before having the other knee done. Nice.

In March of 22, my quad/thigh muscles on the outside and inside of my thigh started to atrophy. I still was not able to go up steps without pulling up, going down was bad, and still use hands to rise out of a chair. I saw a new ortho- he said, nerve problem, and sent me to a neurosurgeon. Neurosurgeon, did MRI of brain, cervical, and lumbar. All came back fine.

He sent me to a nerologist, who did an examine, reflexes good- took history (at end, said- we can rule out big scaries like ALS, and MS) He then ordered EMG/NCS, legs. He indicated the EMG was abnormal. It showed same- right femoeal reduced amplititude of motor neurons. Both neurologist indicated that fat, could have attributed some to marked reduction. My MUAP was intact recruitment- which lead him to diagnose as femoral neuropathy. He was frank- that he did not know what was going on with the muscle. That was in August 22. He ordered an MRI of lumbar/plexus, it came back clear. I saw him for followup in Nov 22. He reiterated femoral neuropathy, but did not know the cause. Could it have been from surgery... who knows.

Fast forward to April 23. My knee blew up, got even more swollen, red, hurt to put weight on it. Went to ER- worried about infection or blood clot. They thought infection or loosening of joint. Saw ortho next day- aspirated the knee, no infection. Raised WBC and RBC, but not worried. I will add- lots of previoys bloodwork- all looked good, always, short of immature granualcyctes, and NRBC. we are testing for allergy to metal in knee- but it is a looooong stretch.

My knee/thigh remains tight. My other leg remains stiff. Now, as of 2 weeks ago, my shin and top of my foot sorta feels numb or asleep.

When I met with my neurologist 3 weeks ago (before numbness in shin), he offered up 2 possible explanations on knee, but he did not feel it was an ALS thing. He asked had things changed drastically? My reflexes wwre fine, he commented that my reflexes shouldn't be as good as they are with that muscle. He did a referral to a neuromuscular doc at a huge university/hospital. He was willing to do that back in Nov, but his reassurance, led me to think it wasn't necessary. There is a 8 month wait to get in to this doc.

Very nervous, I asked the doc, ... we ruled out the big scaries... right??? He said again, I don't believe this is something within your CNS, nor just outside of your spinal cord, and we are not concerned with any weird cancers. He said we worry about ALS, MS or weir cancers. I don't see any of those. He said, when i did yoyr EMG I got in there pretty good. He said, he did not do a full survey for ALS, that he did not do the tongue, because the other criteria was not there, and if it had been, he would have done it. He said even if he did the tongue now and it showed something, the other qualifiers were not there- so it would be negative.

So I said again... so, we rulled out ALS? He said, as much as one can. He then said, that does nit mean, you might nit get it later, and he added, but that it not to say that I might not get that later. He said it is a caveate to say, while it is rare, anyone can get it and we don't know what the future holds. But, he closed with- I don't see anythibg at this point in time that says ALS, and certainly the knee issue right now, is not indicative to ALS.

So this is what worries me a lot. His report shows that my symptoms- sorta date back to 2017. Which it a little correct, but the actual symptoms for this really kicked in 3/2020, with that jog, to me. So if he is hanging his hat on -no ALS because of the 2017, timeline, I am not sure that is correct. And that weighs heavily I think in his thoughts I think, possibly. I did message the "clarification" timeline in the portal last year, and All they said was he wanted to do the MRI to evaluate further.

I should add, I do have some twitching. My hands feel a little stiff. Also- probably unrelated, i have had awful itchy rashes for past 1.5-2 years all over my whole upper body. But I am a nervous wreck too. My left leg has tingling on outside of thigh, but I know tingling is not an ALS symptom. I have a 11 year old, and I am so worried this is something very serious.

I know this was long... so thank you for taking the time to read all the way through.

 

[Nikki J]

I don’t think from all you wrote the timeline difference matters in his assessment. And what he said about could get it anytime in the future is not unusual. Doctors are afraid not to say that in case someone gets ALS in the future and sues them even though a person didn’t have ALS when seen. No one has a crystal ball

it certainly sounds like you have some challenges but as your doctor said it doesn’t sound like ALS. Please follow up as you were advised and work with your doctor

 

[lgelb]

I agree that the primary issue doesn't sound neurological, so while you wait for the neuromuscular appt, I would see a physiatrist (PM&R). It seems that more sophisticated rehab, beyond that of run-of-the-mill PT, might help. At least, it's worth researching.

That the tongue was not included in the EMG would not be a concern to me. It often is not, for people with way more concern for ALS than I think you have.

Whether we go back to 2017 or 2020, your problem does not resemble ALS for me nor evidently for your PCP, neurosurgeon, or neurologist. You have had two major surgeries + at least one cortisone injection, and evidently haven't responded optimally. In addition, the years you carried around extra weight (congrats on losing so much) can certainly take a toll on muscles, nerves, and connective tissue. Physiatrists often address this kind of chronic damage.

Best,
Laurie

 

[csforrester99]

Thank you Laurie and Nikki, for yoyr response. I value your opinion.

I suppose the timeline was of concern to me, because he asked two key quedtions. 1. Had I lost a lot of weight prior to symptoms? My response, I have always had a weight problem. Then, 2017 meniscus tear/repair. Weightloss surgery 2020. But, again these neuropathy systems and massive atrophy- 2021-2022. So, yeah, in effect, I lost a b7nch of weight right before symptoms. 2. When did your symptoms start? Me, again, stupidly- lay out the whole leg history. But... for these symptoms (different from 2017) did not start untill 2020.
2020- trip, muscle stiffness, led to frozen joint.
2021- quad weakness, inability to go up or down stairs, or rise from a cgair without using hands (abnormal EMG- right leg and moderate dsyfunction in left femoral)
2022- massive quad atrophy, continued weakness (abnormal EMG)
2023- atrophy extends to calf, current sensatiin of heaviness, or foot is asleep, slight atrophy in foot beginning. Other leg/thigh heavy, stiff and muscles, look like beginning of atrophy. Hands slightly stiff. Twitching off and on bicep, thigh, foot.
Diagnosis femoral neuropathy, eitology unknown

At my last neurologist appt, he said, part of me wants to do a whole new study on you and EMG you again. To see if somethong else is going on. AKA- I missed it. He wants to know- what he can't figure out. Things should make sense. I thought- well why don't you? But he said, he thinks someone with more expertise is needed, fresh eyes. He said he knows they will repeat some of these same tests. Add more. He said, put a label on it, tell you what it is, and isn't, when you should worry, and what to do next or nothing at all.

I know that ALS is a diagnosis of exclusion, time and progression. We have excluded most. If his timeframe of 2017, which now would be 6 yrs in is a reason for him to take ALS off the table, (he has said, you have been experiencing this since 2017, we would have already seen more symptoms of ALS-). But if it actually began in 20/21- technically this could be the beginnings, yes?

The neurosurgeon was concerned about ALS. When he sent me to the neurologist, he sent extra notes. The neurologist commenting he thought he was going to see something much different when i came in, and his tests would go into a diff direction. I 9nly have briefly discussed this with my PCP. He is sorta a dud to put it nicely. Lol

Trust me, I am not one of those looking for a dire diagnosis, far from it. But I don't want to stick my head in the sand either. I hope this makes sense. I like the idea of seeing soneone beyond regular PT. I am not sure we have those in U.S.? Thank you again for your time. I will await to meet with neuromuscular.

Thanks guys!

 

[lgelb]

Yes, we have physiatrists in the US. The site to find who's Board certed in that is here.

I understand what you are saying, but trying to read tea leaves through someone's thinking out loud and wanting to be thorough, is a fool's errand. Even if we skip to 2020, the timeline would be exceedingly rare, and I have never heard of one such as you describe.

The weight loss timing is a red herring given your past weight and surgery, in any case. What we sometimes see is someone losing weight from unappreciated atrophy secondary to the onset of MND. But most localized atrophy is a result of injury of one kind or another. We have several possible reasons for local injury in your case, and there can be more than one. You report no evidence of a systemic (or CNS) process, a very good thing.