In the In-Between

[SilverT]

My bio explains a bit but I’m not curious about my symptoms so much as on handling them or knowing that others deal with them too. My neurologist is leaning towards ALS and gave me the option of going to one of three major neurological centers for a second opinion. That appointment is in October. Maybe she’s just unsure and that’s still promising. Though I’ve been to her about this 4 times so far and now moving on to another. Anyway, being in between diagnosis is a bit lonely to be honest. I’m so sick of my muscles flopping around, not making progress in PT, and this fatigue is such a profound thing. She said I can increase gabapentin to see if it calms my fasciculations down at night so I’m hoping.
I constantly wonder if it’s all in my head, but the EMG says otherwise I guess. Maybe I’m weaker because of Age? Laziness? Has anyone had those thoughts?
Reaching out to others that experienced the in between too to see if you’ve been there done that. Thanks

 

[KimT]

It's hard to be in limbo, no matter what the final diagnosis. I ended up getting four opinions, three from Centers of Excellence. So, I feel you. I was a runner and just thought, at 59, I was getting old. My local neurologist saw some things in my clinical exam (I was there for follow up on a TBI) and insisted I go to Mayo for a full workup. I put it off for months before I agreed to go.

Have you tried to get in to a teaching hospital with a MND specialist? The wait can be shortened if you're referred by your local neurologist.

 

[SilverT]

Thank you for responding. My neurologist gave me the choice between John Hopkins, UVA and Duke University neurology. I picked the one closest to me. She said if they don’t get in touch with me within a few weeks to contact her again but they did…and first available was October. So in between I see my neurologist a couple more times and every time she does the nerve tests. Thing is, it was a central scheduler and the doctor she put me with has nothing to do with my issues. I think, based on my drs notes, she wanted me to go see a specialized Dr. I think maybe I should ask her.
I want to think she’s not thinking it is ALS, but logically I’m sure she wouldn’t send me a few hours away just for any neurologist to give me another opinion; she has a group of them in her office.

 

[lgelb]

Not sure what you mean about the EMG. If you could post it (de-identified), we could be more helpful. Chart notes would help as well.

 

[SilverT]

I see a lot of people have copies of their EMG’s & Nerve conduction studies. I don’t. To be honest, I first went to the neurologist for something different and ALS wasn’t anywhere in my radar. I honestly didn’t know much about it. I have another visit with her before my visit with the university doctor and I think there are questions I will be asking that I didn’t know to ask before. I am not looking for an online diagnosis because there’s no point, but while going through this long process there’s no where to talk to anyone that may understand concerns. I cannot stand on my left toes and last night I couldn’t pick up a can of tomato sauce. Maybe my neurologist is sending me straight away to a university for good reason. In the meantime I do appreciate responses and solid information from those more experienced in all this. Thanks.

 

[ShiftKicker]

Hi Silver-

You are entitled to your medical records and can request them from your doctor. This is real hard data that can help the people here provide you with the most appropriate advice. There are other reasons for clinical weakness, so the results can be helpful.

 

[SilverT]

Yes, absolutely I will ask for the nerve conduction test results. It’s okay really, as I said before, it’s the long process and wait that is a bit isolating and knowing others understand that feeling is helpful in itself. Thank you for responding, I do appreciate it!

 

[SilverT]

I didn’t start a new thread so hopefully someone with knowledge will see this one. Before I go to the Duke specialist, I am seeing my local neurologist one more time. I’m sure she will do the EMG again. Previous nerve tests produced some positives. I don’t think it was out of the ballpark though, but just enough it made my neurologist concerned.
My question is if anything I do, or medication I take, can cause false positives. I read that blood thinners and nerve & muscle medication might affect results but not sure in what way. I take aspirin, gabapentin & Cymbalta. I wasn’t told not to take any of them, but I also don’t want false positive results either. Because of fasciculations I was going to increase the gabapentin to hopefully calm them down even just a little.
What are your experiences with this? Did you need to stop taking medication before any of these tests?

 

[Nikki J]

None of those are going to affect seeing ALS. If they reversed denervation we would all be taking them. When I was in a genetic carrier study they didn’t say to stop any prescriptions. I think the blood thinner is because they stick needles in you and people on prescription anticoagulants might leak more.

 

[SilverT]

That makes total sense. Logically she would have told me to stop them beforehand if it affected anything. Thanks!

 

[SilverT]

Friday I go to my neurologist for the 5th/6th time. I’m sure she will repeat the EMG as usual before I go to UNC in October. The results of the EMG…I just ask for a copy? A print out? I myself don’t think it’s ALS at all. In fact, I have my own theory of what is going on, but I will still go for the second opinion as my Dr would like to be sure.

 

[Nikki J]

They probably won’t give you anything at the visit. If you have a patient portal it should appear there You could ask when it will post. If for some reason it doesn’t go on the portal ( it should) you can make an immediate record release. Before everything was mandated to be available online I used to request my notes and mgh medical records sent them secure email

 

[SilverT]

Gotcha. I do have a portal but it doesn’t show the actual results like I’ve seen on here. It has her written comments. I will ask them about it. I honestly wouldn’t know what it means by looking at it myself, but I do want it for my files. I think I was too apprehensive after she uttered “possibly ALS” but I’m over it and am going to ask more questions.
Thanks for the guidance - it’s appreciated.