New issue from MRI on R foot & ankle

[Trying2Bcalm]

Hello again to everyone. I had another thread so my history is there. I took all the advice along with the EMG results from July and the clinical exams and I have been doing well at moving on despite the twitching. BTW, reading the old threads on BFS site were very helpful too.

I, unfortunately, have had something new come up that I want to seek your opinions/input on. I went in this morning for an MRI on my R foot and ankle for suspected Morton's Neuroma. I have attached the results here and it was very alarming for me and have me very distressed. It finds multiple areas of atrophy in foot muscles as well as the distal gastrocnemius muscle. I had a follow up with my neurologist on 9/14 who only did a repeat of the clinical exam on my upper body. (the one on 7/7 was more thorough and included lower body that he declared normal with noting reduced reflex at heal that he suspected tarsal tunnel on). (twitching began 5 months ago)
ok, so--There doesn't seem to be any visual signs of atrophy and I have no clinical weakness that I can tell; I can do calf raises and heel walk and pick up a shirt with curled toes. But the MRI showing atrophy is making me a nervous wreck.
I don't have the words for a proper question right now on if this is a warning sign or what in the world is going on. Any input would be greatly appreciated!
(I can't get in for a dr. visit on this for a couple of weeks)

 

[ShiftKicker]

Hello-

Your symptoms and EMG results do not indicate ALS, as was stated to you in your previous thread, and also by your neurologist. Please understand this forum can not be used in place of medical care, nor can we provide you a diagnosis. Your neurologist is who you should be consulting for any further information about your scans and what they might mean or for next steps in figuring out what might be wrong. If you have questions, your medical care provider is your best bet.

 

[lgelb]

The MRI report clearly states that you have some chronic foot and ankle issues, and that one of the causes of atrophy is disuse. When you have chronic pain, swelling, or changes in function, naturally your walking and other use of those muscles is likely to change. If you get the problems treated, you will likely be able to engage in more of the movement that can address the atrophy as well as your pain and swelling. The podiatrist that ordered the MRI can help you. None of this has anything to do with ALS.

Best,
Laurie

 

[Trying2Bcalm]

Thank you so much for your reply! and thank you for your time and second set of eyes on the MRI report because, I have to be honest, with the recent anxiety and worry about the twitching and everything there - as soon as I saw the word atrophy multiple times, logic and thoughtful reasoning said bye bye immediately. After I read your post, I went back and calmly and slowly reread the MRI. (I was able to anyway....) and you are absolutely right, a chronically torn ligament and a ligament complex that is currently listed as torn would no doubt cause disuse atrophy of those attached muscles. And certainly just as logical reasoning for the other 2 mentions of atrophy.
God Bless and thank you again. (I already have scheduled a lower back MRI in October and follow up EMG in early November that was set by my neurologist at the 6 month mark of the onset of the twitching - he feels strongly that pending nothing remarkable, he will dx BFS)

 

[affected]

Thanks for being honest.
Now remember, you have been cleared of ALS, so coming back here really needs to stop unless you develop new symptoms that cause a neuromuscular specialist to diagnose you with ALS.
NOT because you get some new symptoms and want to rush back here.

All the very best, please let your doctors help you get back to health.

 

[Trying2Bcalm]

Since the BFS forum that is linked in the sticky is no longer active, is there any other BFS forum or community someone can recommend?

On the EMG - since a normal result only clears you for "right now", any consensus on timing of follow ups? (6 months, a year,)

Thank you for these last 2 questions and your support over that last month+.

God bless!

 

[lgelb]

Reddit: r/BFS

Re the EMG, a normal result clears you period, unless a neurologist recommends a followup for a clinical reason. Yours would probably be amenable to letting the six-month EMG go.

A new clinical reason seldom emerges with clean EMGs in the situation you have described. EMG examiners would like to focus on, and insurance companies pay for, EMGs that have an "indication" apart from fears of ALS.

In short, I'd focus on your foot, not a disease that you don't have.

 

[Nikki J]

Reddit muscle twitch is better. There is a good facebook group too. Bfs recovery I think

 

[affected]

Next time you get worried, go talk to your doctor who can discuss everything in context of your situation.
Reddit and FB seem to be the best place for twitchers now.
Please put this behind you, if you can't, ask you doctor for help.
I wish you a long healthy and happy life ahead.

 

[Trying2Bcalm]

Hi to everyone.
Thank you for the referral to those BFS locations....they are helpful!
I am only here to ask one pointed question that the members here may have a particular expertise on. (there is just too much contradictory information out there, as you all known very well)
When the EMG/NCV is done, how far in advance can you realistically expect that is going to pick up MND being present? (i.e. can not be done too early) - (I am certainly not including a coincidental patience developing it years down the road or anything)
Thank you and God Bless.

 

[affected]

The EMG will pick up ALS in areas of your body you didn't even know had problems. So it can't be done too early - if you have any symptoms at all and you have ALS, the EMG will find evidence.
While there is contradictory information out the, always refer back to this as it is our official position.
Hope that helps.

Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

We will try to answer reasonable questions. We are not here to argue with you. If you announce that you ”know” you have ALS when the doctors say otherwise, or you have not bothered to see a doctor, your thread will be closed. It is not our place to try to convince you you are wrong. Neither...

www.alsforums.com

 

[lgelb]

It's the "far in advance" red herring that's tripping you up. If you really had symptoms down to ALS, those areas and very likely others would show distinctive EMG changes. They didn't.

Instead, the EMG shows another explanation for your problems, which is awesome.

There's no "you're in the process of getting ALS" stage that an EMG later would be more likely to pick up. It's not like a blood test that can pick up pre-diabetes. It shows a picture that is consistent with ALS or not, and there are no muscle issues that are like "oh, you could be developing ALS." You have it or you don't.

I think we're done here, so closing the thread. Please do not start another, but you are advised to follow through medically with the issues of your foot.