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ecutchins

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Joined
Sep 11, 2013
Messages
33
Reason
PALS
Diagnosis
11/2013
Country
US
State
Minnesota (MN)
City
Fridley
I've been seen by a local neurologist and he has referred me to the Mayo Clinic. I tend to completely forget any questions I have until after the visit. I also don't know what to ask in this case.

Here are my symptoms:

Weakness in both arms with the right being the most severe. I can't raise my right arm above my shoulder.
Fine motor skills in both hands are just about completely gone.
Muscle atrophy in hands, arms, shoulders and upper legs.
Increased saliva production. I've had dry mouth for years until the last month or so.
Foot drop on the right side.
I also have an odd feeling in the upper right chest and abdomen. It's kind of like a muscle contraction or tightness that doesn't change.
I've also noted that whenever I get stressed that impact on my arms is greater.

My EMG's were done in two sessions. The first was right arm only and the second was left arm and both legs.

The neurologist told me that after doing the right arm that he suspected ALS but after the second EMG he didn't know what to think because of all the indications. The diagnostic code that my insurance was filed under was for muscle wasting disease. So here is what the neurologist told me:

EMG of right arm indicated ALS.
Carpal tunnel in right wrist.
Ulnar nerve entrapment in left arm.
Neuropathy in both feet. I'm diabetic and have had neuropathy for several years with no changes.

What I'd like to do is put together a list of questions to ask. So what questions did you ask, what did you wish you asked or any other thing you can think of.

Thanks
 

slimva

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NOVA
Did you have a NCV performed, or just an EMG?
 

ecutchins

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Joined
Sep 11, 2013
Messages
33
Reason
PALS
Diagnosis
11/2013
Country
US
State
Minnesota (MN)
City
Fridley
I had both tests along with MRI's and CT scans. I just had 16 vials of blood taken but don't have any of those results yet.
 

slimva

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what were the results of the ncv? I've read that in a lot of ALS cases the NCV is normal and the EMG is not. If they diagnosed you with carpal tunnel and ulnar nerve neuropathy, your ncv was probably abnormal.
 

ecutchins

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Joined
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Messages
33
Reason
PALS
Diagnosis
11/2013
Country
US
State
Minnesota (MN)
City
Fridley
I was at the Mayo Clinic yesterday and will have to say that I'm very impressed. I had a very thorough visit with the neurologist. She explained the possibilities and I have a list of what she thinks I could have. They are:

1. Brachial Plexus inflammation - Scheduled for spinal tap tomorrow morning, which could help rule this out. Also, follow-up with neurologist in the afternoon to get results.
2. Cancer - Had paraneoplastic antibody testing and results were normal.
3. ALS

Other blood tests show CK at 314, low normal B12, low hemoglobin, normal AST, ALT, TSH, CPR, ESR, B1, B6 Immunofixation and ANA.

So back to Mayo tomorrow for the spinal tap and neurologist visit. So finally feel like I'm getting answers.
 

vickim

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03/2012
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It sounds like you are getting closer. I have fingers and toes crossed for you. Good luck.
 

TeresaElizabeth

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Just a word if advice on your spinal! Drink lost of caffeine before and after your spinal. Also load up on plenty of fluids...
Just passing this on...
 

ecutchins

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Joined
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Messages
33
Reason
PALS
Diagnosis
11/2013
Country
US
State
Minnesota (MN)
City
Fridley
Well the spinal tap is done and I have a preliminary diagnosis. The doctor thinks I might have CIDP because of high protein levels in my spinal fluid. I have to go back next for for an EMG and MRI. The doctor at Mayo is redoing the EMG because she has questions about the first set of EMG's that were done. She's also doing MRI's with contrast because the first set of MRI's were done without contrast. If the EMG and MRI confirm what the doctor suspects then I'll be starting IVIG before the end of the month as long as my insurance covers the IVIG. If the EMG and MRI don't confirm the doctor's suspicions then it's ALS.

I'll have my answers on the 22nd of this month. I'll be hanging around and reading posts until I can post a confirmation as to my diagnosis.

Thanks everyone for the support and understanding I've received here.
 

vickim

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I will still have fingers and toes crossed and hoping for the best.
 

ecutchins

Active member
Joined
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Messages
33
Reason
PALS
Diagnosis
11/2013
Country
US
State
Minnesota (MN)
City
Fridley
Well I had a very interesting trip to the Mayo Clinic on Friday. I went down to meet with physical and occupational therapy. I didn't know what to expect since I don't have a diagnosis yet.

I met first with a doctor in the Physical Medicine & Rehabilitation department. We chatted a bit and I asked about the results of the EMG and MRI I had last week. He said that the neurologist would go over the results at my appointment on the 22nd. He then went about checking reflexes and testing my strength. He told me he would be sending his recommendations to the PT and OT that I'd be seeing later in the day.

The Mayo has a great app for your phone and doctor's notes and comments are posted for patient review. I checked my phone while I was having lunch and the notes from my appointment were posted. The really interesting thing is that in the doctor's notes was an excerpt from the EMG which stated that there was not evidence of CIDP. Also, under diagnosis this showed up; Disorder of motor neurons or their axons involving C5 to T1 segments.

During the afternoon appointments both the PT and OT spent some time talking about ALS and how PT and OT would help. So now I'm waiting until my appointment tomorrow afternoon to see what the neurologist has to say.
 

vickim

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Hmmm that is interesting. I would think the dr would talk to you first before putting anything that you would have access to and misinterpret. I am still wishing you good luck and crossing my fingers and toes.
 

ecutchins

Active member
Joined
Sep 11, 2013
Messages
33
Reason
PALS
Diagnosis
11/2013
Country
US
State
Minnesota (MN)
City
Fridley
I had my appointment with the neurologist at Mayo yesterday. I left the appointment more confused than ever but there is a plan. The doctor still thinks there is a possibility that I have CIDP so I'll be starting IVIG as soon as the insurance precertification is done.

The doctor said that we'll try this for the next 13 weeks and see what happens. If my condition continues to get worse after the treatments start that we'll stop the treatments.

Thanks everyone for the support and concern. I'll update after the IVIG treatments start.
 

vickim

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Joined
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I hope it works for you. Keep us updated. Good luck.
 

ecutchins

Active member
Joined
Sep 11, 2013
Messages
33
Reason
PALS
Diagnosis
11/2013
Country
US
State
Minnesota (MN)
City
Fridley
Why does this have to be so hard? I'm frustrated beyond belief. The Mayo Clinic called and because they are out of network they can't do the pre-authorization for the IVIg treatment. I saw my family doctor and I asked her if there was anyway to do the infusions here instead of the Mayo and could she do the pre-authorization. She said that she would check and see what she could do. Well today I found out that the in network location, the University of Minnesota, won't do the infusions until they see me first.

Just got off the phone with the University and the earliest appointment I can get is Nov 20th. The scheduler said that was much better than she thought because she knew one of the doctors was booked until Feb. This is getting like the military with the hurry up and wait.

I was also on the CIDP website yesterday and they have a link to being misdiagnosed with CIDP and say that you should get a second opinion if your diagnosis is based on only one criteria, which mine is based solely on high protein levels in my spinal fluid the MRI and EMG were negative for signs of CIDP. Of course, they want you to go to one of the CIDP Centers of Excellence but the closest one to me is Kansas City. I don't think I could get a referral for this so it would be on my own dime.

So now I'm waiting till Nov 20th for the next step.
 

Mediasmart

Distinguished member
Joined
Nov 4, 2013
Messages
392
Reason
PALS
Diagnosis
08/2013
Country
US
State
NY
City
Orient
"EMG of right arm indicated ALS.
Carpal tunnel in right wrist.
Ulnar nerve entrapment in left arm.
Neuropathy in both feet. I'm diabetic and have had neuropathy for several years with no changes."

Not for nothing the first person to spot potential ALS in me was the hand surgeon who performed the carpal and ulner procedures. He noted the fasiculations in my left hand and the severe atrophy. We went with the surgery anyway and that arm went downhill pretty fast thereafter.

I'm at Columbia Presby/Lou Gehrig clinic now in that state where the doctor has moved me from "no" to "probably" and wants to wait to put me on "definite"....making sure that I fully understand the implications and his medical liabilities if the diagnosis is wrong.

Long story short, no matter what, keep testing and trying to get to the bottom of it. My next appointment isn't for 3 more months and as my symptoms worsen, the waiting for the shoe to drop is maddening. Keep at it.

It won't change anything, the final diagnosis that is, but it may give you comfort in knowing even if the message is bad.
 
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