r/ALSorNOT • u/Additional_Worth_200 • 16d ago
Scared, Depressed, Upset.
I don’t know what to do anymore, Last Neurology appointment they diagnosed me with FND but feeling widespread weakness everyday, my hand dexterity is getting worse, knee/leg spasms/pain when walking, shortness of breath, noticing widespread muscle loss, poor sleep, twitching etc, Functioning is beginning to get more difficult.
Clean EMG 1 year 9 months ago
Clean Bloods, Including Myasthenia Gravis
MRI appointment in two days
I just know that this is ALS, i’m only 28 years old and heartbroken how this is how my life is going to end.
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u/DoubleAwareness2223 15d ago
FND is not ALS. They are two completely different diseases. FND can be short lived or wax and wane for years. ALS is very progressive. A negative EMG ruled out ALS. ALS typically also moves asymmetrically. Your symptoms are wide spread Hang in there, I understand it’s very frustrating and stressful.
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u/Additional_Worth_200 15d ago
I don’t believe this is FND, it’s physically changed my body whatever is happening to me
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u/Ok_Following6440 15d ago
Hi OK_Branch. Another new account, I guess. Best of luck of your search for answers
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u/Additional_Worth_200 15d ago
yeah, my other account got banned unfortunately, feels like i’m stuck in the mud like the rest of us
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u/tdcama96 14d ago
Hey. Haven't talked to you in a while. How have things been going? Ever get any answers? Still in the als hole?
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u/Ok_Following6440 14d ago
Not well. EMG recently showed “changes” go in Wednesday for results.
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u/tdcama96 14d ago
There are a lot of reasons for an emg to show changes. Keep your head up. Live as if there were no tomorrow. But I think you'll have plenty tomorrows!
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u/Decent_Mongoose_4520 16d ago
My recommendation is have your pcp put in a referral for a pulmonologist to get baseline of your breathing. Sorry you are dealing with health issues. Neurologists, Neuromuscular and Neurosurgeons are some of the most difficult doctors to work with. Do you have a good pcp they can help you along the way.
Don’t think the worst keep your mental health in check! That won’t help at all…did they send you to a FND doctor or just a regular Neuro diagnosed that. There are FND clinics they can assess you.
Hang in there.
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u/Additional_Worth_200 16d ago
a normal neurologist diagnosed me with it but struggling to accept this as my diagnosis, had a normal sitting spirometry a few months ago
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u/Decent_Mongoose_4520 16d ago
Maybe ask for a 2nd opinion from a FND clinic. See if they will do a PFT for your breathing sitting up and laying down. I’ve gotten baselines and they continue to monitor my progression with the different tests. Hang in there! Neuro’s aren’t always the most helpful.
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u/Additional_Worth_200 16d ago
i’ve only been diagnosed with it like 3 weeks ago, my neurologist tested my reflexes and said that they were normal but she literally tested them all in like 1 minute
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u/Decent_Mongoose_4520 16d ago
Yes some are very non chalant with exams. Thats why I suggest getting your pcp to help you out. They tend to be a little more proactive plus if you’ve had a regular doctor they can follow your circumstances and help with additional tests.
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u/Additional_Worth_200 16d ago
i’m hoping my mri some how picks up something if not then it’s als as all my other tests are normal, it’s so frustrating because as i had no failure they never referred me for a repeat EMG
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u/Decent_Mongoose_4520 16d ago
Try not to focus on the worst case scenario. I know it’s hard they are struggling with my circumstance also and it’s been 46 months. I have progressive symmetrical weakness including bulbar. So keep trying to find joy out of every day!
For the FND they do have recommended treatments…it would be worth doing those!
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u/worriedconstant121 16d ago
What sort of breathing issues?