A list of pertinent questions to ask my neurologist?

[JEB1979]

I apologize, but I accidentally closed a window and this thread got deleted before I was able to post it, so this is my second time rewriting everything.

I had a blood test and neck/spine x-rays done this week and I have head and neck/full spine MRIs along with a type of EMG (needles being inserted into muscle) next week. After that, I meet with the neurologist and he will explain the results to me and tell me where we go from there.

I wanted to ask the forum's help. I've been going through this for about a month now, and during my first visit I had a test for creatine kinase and CRP done. However, I was later told in this forum that those weren't screens for ALS! If I had known that at the time, I would have asked better questions. I'm hoping to compile a list of questions to ask the neuro at my next visit. Since the people here have so much knowledge in this subject, I was hoping I could get your help. Could you please give me an idea about what sorts of questions I should ask? What I formation should try to find out? I will bring the paper with questions along with me to the next visit.

I'll post this now before I accidentally delete it!

 

[JEB1979]

Here are the questions I've thought up so far...

1. What did the blood test check for?
2. Did the test show any possible reasons for my fasciculations?
3. What were the MRI results?
4. Are there any compressed nerves?
5. Could compressed nerves cause fasciculations in the upper AND lower body?
6. Could my fasciculations be examined by my microdiscectomy? Would this explain my upper and lower body fasciculations?
7. What could explain the aches and weakness in my arms? Could they be caused by nerves?
8. If there is a spinal problem, could it be fixed without surgery?
9. If its a motor neuron problem, how serious is it? Is it fixable? Is it something I can live with? If you don't know what it is yet, do you have any theories?
10. What's the next step? What should I do next?

 

[ottawa girl]

Strongly urge you to go in there with an open mind. No pre conceived ideas. Listen very carefully to what is told to you. Or as others would recommend, have someone else go with you to take notes.

If it's ALS - you'll be referred to a clinic. Then you'll come back here and we will help you.

If it's not, you will hopefully be told what it is. Or you'll be asked to return in x number of months. Many many conditions are diagnosed only after they manifest themselves more clearly. It doesn't mean the neuro is incompetent.

Good luck to you.

For the record - I'm betting it's not ALS

 

[JEB1979]

Thank you, ottawagirl! Are you betting from what I've said regarding my symptoms, or hoping...? I'm also hoping, but I just don't know! If you could tell me why you don't think it's ALS, it would certainly ease my troubled mind and I'd be so very grateful! I could certainly use some positive reinforcement right about now.

I am absolutely trying to keep an open mind and hoping it's anything but ALS...that benign fasciculation syndrome is what I'm praying it is, but I also know it could just as easily be some sort of spinal problem. My fear of ALS is because it had happened in my family before, and all the symptoms seem to "fit" (that is to say,nothing seems to go against any of the symptoms).

Still, I want to be as informed as possible and get information that I can then pass on to my spinal surgeon in Puerto Rico, so I can get his point of view on my situation. Any objective observations from other board members here would be helpful too!

Thank you so much for your reply and your kind words!

 

[ottawa girl]

Gut feeling.

That's all.

 

[JEB1979]

I was hoping for something like "your symptoms don't really match", but if you're going to go with gut feeling, I'll take it.

 

[JTorm]

I would definetely want to know if a bilateral s1 root irritation can cause denervation in both calves and the feeling of the ankle (right) (foot drop progressing)....ALSO i would definetely want to know if having that and also having cubital and carpal syndromes is NOT ALS...

Those were My EMG conclusions... and the neurologist didn't send me for a MRI to check on the s1 root...

I'm also waiting new blood tests because i have some proteins high... BUT... i'm concerned more about the feeling of gradually getting foot drop

 

[paul71]

I'd like to find out the list of "ALS mimics" that are actually treatable.

By that, I mean, so far in my case it seems like they're leaning away from ALS, but when the surgeon who did my biopsy asked what I was hoping for, and I sais "something treatable", she just sort of got quiet. Like she was thinking "poor guy" and when I asked what I could have that is curable (my MRIs of spine were all good, so no nerve compression), she said "not much".

It was very honest but also very disheartening.

 

[Txgirl]

I'd like to find out the list of "ALS mimics" that are actually treatable.

By that, I mean, so far in my case it seems like they're leaning away from ALS, but when the surgeon who did my biopsy asked what I was hoping for, and I sais "something treatable", she just sort of got quiet. Like she was thinking "poor guy" and when I asked what I could have that is curable (my MRIs of spine were all good, so no nerve compression), she said "not much".

It was very honest but also very disheartening.

There are a few things that mimic ALS. Lyme disease is one. Your doctor should have drawn lots of blood. I was checked for Guillain–Barré syndrome, MS, Celiac disease, HIV, Lyme, Leukemia, MMN & some I can't remember.
Maybe what you have is TREATABLE. There is a difference between curable & treatable
I am hoping for the best for you.

 

[JTorm]

Hello Txgirl! can i ask you a question... i know you are not a MD.. but out of curiosity... and in relation to that diseases that "mimic ALS".... When they tested your blood... nothing came abnormal, like protein serum?

I'm starting to lose my mind..! lol.... as i mentioned..i got EMG with denervation.. in both calves.. got also s1 root "thing" going on.. and my first blood test got some high proteins (which investigating might be from autoinmune diseases such as lupus, RA, HIV, Lyme, cancer, leukemia, etc.etc.)... So now I'm getting deep blood tests!

Makes me wonder... Is it something BAD we did to the world... I don't think so.. I have a wonderful mother that stresses out seen me in this situation... I, as many of us people in this forum wont want our family to go through hard times..

Before this all started, I got one big desire in my life.. and that was to become President of my country (Panama)... I have visualized my career numerous times... I'm a young lawyer and Broker, madly interested in Politics... and now i still want it but theres not much bigger desire than health...

 

[monster]

JTorm- my blood work also came back with a an apparent polyclonal gammopathy, IgM was high, no M spike. Now my IgA is also low. I am not diagnosed with als.

JEB1979: I asked my neuromuscular doctor if my symptoms were from a safe or progressive condition.
Good luck to you

 

[Txgirl]

Hello Txgirl! can i ask you a question... i know you are not a MD.. but out of curiosity... and in relation to that diseases that "mimic ALS".... When they tested your blood... nothing came abnormal, like protein serum?

I'm starting to lose my mind..! lol.... as i mentioned..i got EMG with denervation.. in both calves.. got also s1 root "thing" going on.. and my first blood test got some high proteins (which investigating might be from autoinmune diseases such as lupus, RA, HIV, Lyme, cancer, leukemia, etc.etc.)... So now I'm getting deep blood tests!

Makes me wonder... Is it something BAD we did to the world... I don't think so.. I have a wonderful mother that stresses out seen me in this situation... I, as many of us people in this forum wont want our family to go through hard times..

Before this all started, I got one big desire in my life.. and that was to become President of my country (Panama)... I have visualized my career numerous times... I'm a young lawyer and Broker, madly interested in Politics... and now i still want it but theres not much bigger desire than health...

My ALT liver enzymes were high & PTH (parathyroid) was high. I hope this helps or answers your question. I pray they do not find ALS in your case. Good luck.

 

[JTorm]

JTorm- my blood work also came back with a an apparent polyclonal gammopathy, IgM was high, no M spike. Now my IgA is also low. I am not diagnosed with als.

JEB1979: I asked my neuromuscular doctor if my symptoms were from a safe or progressive condition.
Good luck to you

@Monster... I'm still waiting for my results. The hematologist that got my first blood values saw that apparent polyclonal gammopathy too with no M spike, yet she told me that although its polyclonal there have been cases of underlying M spike (which doesn't appear), so that's why she ordered more blood studies.

Anyway, there is something i have not been checked for: Lyme. Which is strange because when a person have this sort of blood protein abnormalities, there has to be something going on and people should get checked deep for EVERYTHING...

I have heard in the US and other countries that Lyme is not an actual disease. Well i don't know about that fact, but here in my country, there have been cases of people dying because of Ticks.. (Rickettsia, Borrelia)

I'm not saying that Lyme can induce ALS... I'm just saying that if blood proteins show abnormalities, who knows, maybe you can get misdiagnosed...

@Txgirl, thanks i'll try to relax and wait.. (difficult lol)

Jon