Rapidly developing symptoms

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Llynnrn

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Learn about ALS
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I’ve read a great deal of posts and would like to say to those that have been diagnosed with als or any life altering nmd or those with a family member who has been diagnosed, I am sending positive thoughts and prayers your way.

I am an FNP and feel that my clinical knowledge and anxiety are working against me. I am 36 yo. I developed a severe headache four weeks ago that resulted in an er and urgent care visit. After a negative ct, cta, labs my pcp ordered an mri of the brain and neck. About ten days in I developed a feeling of arm fatigue and weakness. As well as generalized paresthesias. This spread to my legs over the next week. I get intermittent burning in my arms as well.

It is more difficult to do tasks but I am not unable to do anything which seems to be a hard stop in this forum for als. I feel like my muscles are atrophying/melting away. They are burning and constantly feel uncomfortable. I started amitriptyline to help with the burning but honestly all it’s really done is help me sleep and make me a little numb mentally.

I now have muscle twitching. It occurs in my feet calves, thighs, biceps, lip. It happens consistently throughout the day to different body parts. I can intermittently see it but not consistently. I have a negative mri neck. Mri of brain showed one very small white matter lesion. (Nonspecific) Normal cbc cmp esr crp autoimmune panel.

I’m taking a daily multivitamin. I lost my appetite for a while and dropped fifteen lbs over the course of a month. I now force myself to eat with no actual appetite. I saw a neurologist whom didn’t give me a lot of insight, wasn’t impressed by the brain mri, diagnosed me with acute neuropathy, ordered an emg/nerve study. I have an appt in a month.

I’ve made myself continue working, living, functioning as I know I have to but on the inside I’m a mess. I’m honestly looking for insight/guidance while I await the testing. The symptoms seem to be progressing so rapidly and I’m pretty dang scared. I appreciate any insight you can offer in regards to these symptoms and the rate at which they developed in association with a possible als diagnosis. Thanks for your time
 
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I am sorry you are going through this. It is hard, I know, but please stop trying to diagnose yourself.

you do not say what the clinical exam showed

sensory symptoms and their rapid widespread nature argue against ALS as does lack of clinical weakness if you had none. If you did you also know weakness has many causes

neuropathy is a pretty general term so please don’t focus on ALS. Do let us know after your emg. Good luck
 
My reflexes were intact. Pcp didn’t note weakness on clinical exam, the neurologist didn’t check for it but I feel like he’s relying more on the emg for answers. Thanks for your response, I’ll definitely check back in after emg
 
No weakness on clinical exam is certainly reassuring. If anything, your issues sound possibly post-viral. A single white matter lesion that was considered nonspecific is unlikely to be an issue. As Nikki says, let us know about the EMG but meanwhile I see no reason to focus on any MND from what you have reported.

Anxiety can certainly affect appetite and it's important to stay well nourished, so even if you have to resort to smoothies with eggs/nut butter and the like, I would certainly pay that some heed. And whatever your body is dealing with, you want to be in the best possible shape to get through.

Best,
Laurie
 
I hope you can get some help to deal with this while the diagnosis is figured out.
ALS is certainly off the table by all you have reported, so do yourself a favour and log off here for good. You are spending huge amounts of time here and fuelling your fears which won't help anything.
All the best.
 
LIynnrn, as I see it you have a diagnosis from a highly trained, highly educated
Neurologist… and you being a Family Nurse Practitioner you know education
achievements.

“…diagnosed me with acute neuropathy, ordered an emg/nerve study.”

Could it be just a follow up to confirm his/her initial diagnosis for diagnostic coding?

When you care for a patient who has a diagnosis, as you spend time with that
patient, do you begin to question the diagnosis as being accurate? Would you
personally question the doctor who made that diagnosis?

You’re in the “Waiting Limbo” until the EMG/NSC but hundreds before you
have endured the same. You have all the knowledge to be aware of the signs
of falling into Health Anxiety.

This can be a very pleasant time of the year… focus on that until the EMG/NCS.
Come back after your EMG/NCS. Until then…

*I’ll somewhat second the suggestion… don’t linger on this site reading old
threads. (Recently one who had his thread closed many threads ago for his own
mental health was here last night looking at an old thread from 2008.)
 
Hi everyone. I wanted to check back in. I'm still having lots of interesting symptoms requiring a further work up. However mt emg/ncs were normal. I wanted to thank you for your responses when I posted the other day. I have not been back on this board since then as recommended and that did help my anxiety. Sending well wishes to all of you and your loved ones through your journey as it looks like I will be heading in a different testing direction.
 
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