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symptoms I’m experiencing on a daily basis now. The fatigue , weakness in n my legs , fatigue as well as balance issues that keep occurring and now the weakness I’m experiencing in my spine as well. All of this has become a handful for myself. I’m beyond frustrated with this all together now. Getting stuck in one spot all the time is not something I wanna keep doing. I’m alone with this . I keep asking myself is will physical therapy help this or should I go to what I know will give me more… read more

April 7
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Answer Summary

Members rallied around someone frustrated with their neurologist ignoring worsening symptoms of fatigue, leg weakness, and balance issues,... Read more

Members rallied around someone frustrated with their neurologist ignoring worsening symptoms of fatigue, leg weakness, and balance issues, with the overwhelming consensus being to advocate fiercely for yourself, find a new doctor if the current one isn't listening, and explore physical therapy as a helpful first step before considering more invasive options. Several members shared their own struggles with unresponsive neurologists and chronic conditions, offering practical advice like documenting symptoms clearly, being direct about medication side effects, and not letting insurance limitations stop you from seeking better care. A recurring theme was the exhausting reality of living with multiple conditions while fighting to be heard, balanced with determined encouragement to stay strong, speak up, and refuse to let symptoms or dismissive doctors take control of your independence.

A MyEpilepsyTeam Member

Do you feel like this every day? If so you probably need to change your medication since your body is not adjusting to what you're taking. Also, If your neurologist isn't listening to you or you can't get an appointment you need to get a new one ASAP. As mentioned though, PT and exercise/moving does help. I also keep Advil pretty close. Keep in mind, YOU are in control or should be. Good luck my friend.

April 7
A MyEpilepsyTeam Member

LoriHobgoodLewis I’m not trying to let the two conditions take over my life. I’m actually trying to take control over these symptoms. When I see the Nurse Practitioner again in June I’m going to tell her what I think needs to happen. Back in February when I saw her I had asked what Could be done if the MRI that will be taken in June as well if it showed anything, what would they pursue and she told me first physical therapy and I said well what a physical therapy doesn’t help then she said probably surgery surgery would happen. This is the MRI. It’s gonna be taken on the back of my neck. Providing they do a lot for me to go through PT. I’m pretty much gonna tell that PT or OT that I get very fatigued, and that the weakness of my legs is unbelievable to the point it just keeps me in one spot. I have a list that I will be telling her in June though. The nurse practitioner that is and one is I don’t want surgery done if he comes to that.

April 9
A MyEpilepsyTeam Member

LoriHobgoodLewis this has turn out being a daily routine having to stay in one spot. I went out a little while yesterday and was on my feet for awhile by the time I got back home I was exhausted. I really don’t want to have to do a medication change. Due to the fact if it’s medication related there’s always a possibility with another one that the same thing’s gonna reoccur I don’t know if I wanna take that chance or not. Thing thing I do know is I want to be able to worry less about what this is going to do if I continue to push through this. I want to feel more independent as well. I’m not getting out a lot right now because of it.

April 9
A MyEpilepsyTeam Member

Noelle, I’ve been disgusted with mine for quite some time now cause it’s pretty obvious that it has no interest on listening to me. I can’t even get a five minutes worth out of my mouth before he shuts me up.

April 7
A MyEpilepsyTeam Member

LoriHobgoodLewis, Thank you sweetie. The fatigue and weakness I’m dealing with in my legs was acting up around 3 this afternoon. Immediately making me want something more comfortable on. So I think immediately. changed out of my sweats and back in to my pjs and robe for the rest of the day. That’s pretty much my go to comfort when I have things act up on me when whatever starts acting up on me. I really don’t care what time it is. I’ll do just that. I can see what I’m gonna have to do with this doctor of mine, but I know it’s gonna make him mad too, but frankly at this point I really don’t care if I can jump on him and tell him to get off his backside and do something about it then I’m gonna do just that. So he knows I’m not playing around with it.

April 7

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