What Questions To Ask - Neuro Appt Friday

[BeautifulWreck]

Hi all,

I have not posted in a few days. We got a small "book" to fill out in the mail for our appt on Friday. J feels like the left arm, shoulder, and pectoral muscles are getting worse. :sad: He just keeps going along though, still exercising, and compensating with the right side. We are taking EMG findings, an x-ray, and the MRI with us to the next appt. The neurosurgeon who referred us to this neurologist has already sent over his report.

I am curious as to what questions if any we should ask the neurosurgeon, regarding als and/or neuro-muscular disorders in general. We are certain more test (brain mri and labs) will be ordered.

We did get a questionnaire that was about ALS in our "book" - mostly about familial background though.

I think it is going to be a long week til Friday.

Kim

 

[Tokahfang]

Ask if there is any palliative help they can give while he is still in the diagnostic process. I don't remember his exact symptoms, but there are symptom treating drugs for spasms, fatigue, etc.

 

[BeautifulWreck]

Ask if there is any palliative help they can give while he is still in the diagnostic process. I don't remember his exact symptoms, but there are symptom treating drugs for spasms, fatigue, etc.

O that is a good one. He seems more tired lately but it is also allergy season. His muscles seem to spasm more when he is tired too.

Thanks!

 

[Bad Balance]

Be sure to get good information on direct dial telephone numbers for the Doctor's charge nurse and administrative assistant. Get email addies also.

You may be frustrated trying to follow up without this information.

If they cannot give you a clear diagnosis and move you to Physical Therapy....ask how long this will last prior to a referal to a clinic or specialist.

 

[notme]

I'm actually surprised you were referred to a neurosurgeon--my neurosurgeon said I needed to see a neurologist instead.

I'd ask about: Treatment
Working Dx
Parking permits (handicapped parking--to save his legs for other things)


To my understanding, MRI's aren't useful for diagnosing ALS--but are used for diagnosed of MS. Try to think positive til they have a confirmed diagnosis.

 

[Lavender Lady]

They do brain MRI's to rule out MS when testing for ALS. Also often MRI of neck and C-spine to rule out neuropathy, pinched nerves etc. They will probably order several more test too such as a EMG and NCS. Best wishes to you.

 

[BeautifulWreck]

Be sure to get good information on direct dial telephone numbers for the Doctor's charge nurse and administrative assistant. Get email addies also.

You may be frustrated trying to follow up without this information.

If they cannot give you a clear diagnosis and move you to Physical Therapy....ask how long this will last prior to a referal to a clinic or specialist.

Thanks. That is good info for me.

Kim

 

[BeautifulWreck]

I'm actually surprised you were referred to a neurosurgeon--my neurosurgeon said I needed to see a neurologist instead.

I'd ask about: Treatment
Working ALS diagnosis
Parking permits (handicapped parking--to save his legs for other things)


To my understanding, MRI's aren't useful for diagnosing ALS--but are used for ALS diagnosis of MS. Try to think positive til they have a confirmed diagnosis.

We saw two neurosurgeons to start with because of the ruptured disc and bone spurs. But his MRI on the neck and spinal area was "clean" showing no compression/pinching of the nerves. In fact, the last guy we saw and the dr who did the EMG said the symptoms J was having was just coincidental. Since taking steroids and anti-inflammatories he no longer has numbness, pain, etc in the left arm. There were/is two separate issues going on but they are not related if that makes sense. So now we are going to a neurologist - whose actual specialty is brain cancer but he is very familiar with neuromuscular disorders bc that is what he has done research in. Evidently most the neurologists around here really don't deal with neuromuscular disorders. This guy is green (3 years out). If this all seems confusing, well I am confused myself over this at times too.

We are trying to think positive! Some days it is easier than others. We also try to have a good sense of humor.

 

[Alyoop]

Beautiful wreck, the fact that your neurologist is green can actually be a great advantage. Thier knowledge is recent and fresh. They are often not so narrow minded. I went from an experience neuro to a neurologist with 3 years experience and oh what a difference. Thorough examination for the first time, insightful and helpful comments, and not too afraid to hit the text books for more recent ideas. Dont be put off or worried about the inexperience.
Aly

 

[BeautifulWreck]

They do brain MRI's to rule out MS when testing for ALS. Also often MRI of neck and C-spine to rule out neuropathy, pinched nerves etc. They will probably order several more test too such as a EMG and NCS. Best wishes to you.

He has had the neck and spine MRI and the EMG. Thanks for the info tho, the pinched nerve thing has been ruled out. EMG was abnormal in the areas he is having issues with.

 

[notme]

A ruptured disc certainly isn't a 'clean' MRI! Have they considered a myleogram or further testing to check for annular tears or something in the bad disc areas?

Wow I just re-read my first post. It was about as clear as mud. I have not found an 'edit' button for these forums yet.

I always suggest to everyone to get copies of all MRI reports--don't take their word for interpretation

 

[Tokahfang]

A ruptured disc that ruptured towards the center often doesn't cause the vertebrae to impinge on the spinal cord. It's a clean MRI in that the disc problem isn't causing any neurological problems. I have such a disc at c5/c6, it busted in a beautifully centered way, completely asymptomatic.

 

[BeautifulWreck]

A ruptured disc certainly isn't a 'clean' MRI! Have they considered a myleogram or further testing to check for annular tears or something in the bad disc areas?

Wow I just re-read my first post. It was about as clear as mud. I have not found an 'edit' button for these forums yet.

I always suggest to everyone to get copies of all MRI reports--don't take their word for interpretation

We have a copy of everything - DVD of MRI, EMG-NCT Report, Xrays, etc and have had four different drs look at the MRI. Radiologist, 2 neruosurgeons, and a doctor of physical therapy. Even though the disc is ruptured, there is no compression on the spine or any nerves compressed or pinched. It is quite remarkable actually. He has had tests done and it shows that his problem is not coming from the neck/spine at all.

 

[BeautifulWreck]

A ruptured disc that ruptured towards the center often doesn't cause the vertebrae to impinge on the spinal cord. It's a clean MRI in that the disc problem isn't causing any neurological problems. I have such a disc at c5/c6, it busted in a beautifully centered way, completely asymptomatic.

That is how my husbands is. In fact he has issues c5, c6, and c7. We were also told that if their was a compression he would not have all the twitching in his shoulder, back and pectoral muscle on the left side.

 

[trfogey]

Don't forget to ask about if and how your husband should be working out in the gym. They may have some recommendations on what they do and don't want him to do during the diagnostic process.