Is my Neuro in the elimination phase of diagnosis?

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Winelover49

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About four months ago I started twitching in multiple areas; thighs, then calves and then random in arms and thorax but not tongue.
PCP did minimal blood work, all normal except slight increase in CK to 293.

Referred to neuro who did a clinical and said Babinski, reflexes, strength and muscle tone were all normal. I asked her twice if I was presenting with ALS and she said no. She said ALS doesn't present this way but she wanted me to have an EMG and nerve study to find cause of twitching.

Second neuro did the EMG and nerve study and at followup yesterday she stated that there was some nerve connectivity damage on both inside and outside of several nerves. She did another clinical and everything OK but she detected a bit of weakness in right shoulder

She has ordered MRI of low, middle and upper back and brain and a lumbar puncture along with about 50 different blood tests.

For insurance purposes she diagnosed idiopathic progressive polyneuropathy.

She said that there are a number of things that could cause my symptoms and she included ALS as one of them.

I asked her after four months of twitching, starting in multiple locations shouldn't I be having some serious symptoms and shouldn't my clinical really show them to her through Babinski sign, brisk reflexes etc. .

She said ALS is variable, which means it's variable with individuals.

Does this appear that she is looking at ALS and merely beginning the elimination process to confirm?

Thank you for any thoughts and for your time.

Regards
 

Nikki J

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No it means she is looking at the many possible causes of your symptoms.

Nerve connectivity problem is pretty vague though it sounds more like an ncs issue than emg. Ncs abnormalities point away from ALS. If you can post the report without identifying data that part would be clearer
 

Winelover49

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Thanks for your time and response.
I do not have that information.

Regards
 

Winelover49

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Sorry for the rambling, but the neuro explained it this way.

She showed me a piece of wire and said just like this wire has a coating and an inside, it is the same with your nerves.

What has happened is that the outside covering on some and the inside on some have been damaged thus impairing their ability to communicate.

Hope that clarifies it and thanks so much for your patience.
 

KarenNWendyn

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That would imply some slowing of nerve conduction. As Nikki says, that points away from ALS.
 

Winelover49

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Neuro has ordered MRI of brain and upper, middle and lower spine as well as a lumbar puncture.

Referred to a hematologist because some abnormality in blood work. White blood cell count a bit above normal. Neutrophils were way high at 83%, normal is 40% to 60% and lymphocytes were low at 11% versus normal of 20% to 40% . Neutrophil absolutes were also a bit high. ANA was negative.

Neuro said she has not made a diagnosis but ALS is possible and has given me a referral to Houston Methodist ALS clinic. She said it can take up to six months to get in for a second opinion and she wanted to be ready just in case.

Any thoughts?
 

lgelb

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As we have said before, it is hard to think anything without seeing the EMG report, to which you are fully entitled. In any serious condition, especially, it is wise to keep a copy of all your records, yourself, as no one else has full responsibility.

As you know, ALS isn't expected to cause the lab results you've described, but I'd imagine the hematologist will run some additional tests to clarify your situation. When are the MRIs scheduled and what is the stated justification (what she is looking to rule out) for the LP?

Best,
Laurie
 

Winelover49

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First of all, where were my manners.

I forgot to to thank each of you for your comments.

Allow me to do so now...thank you!

She has not said what she is looking for.

I suspect, since ALS diagnosis is one of exclusion she is touching all of the bases.

Thanks once again.

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Kristina1

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It does not sound like ALS at all to me, but continue to follow up with your doctors.
 

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ALS isn't simply a diagnosis of exclusion.

I am sorry it isn't a simple case of something being found and fixed for you. Hopefully you will get some answers soon, but we really can't say anything more as you don't give us anything indicating ALS to go by. I truly wish you the best working with your doctors.
 

Winelover49

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Thanks to all for the responses.

They are much appreciated.
 

lgelb

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The reason I asked about the reason for the LP is that usually for that to be done in the ALS diagnostic process, there should be either a research purpose (that should be shared with/approved by you) or something specific that is suspected, that is not ALS. LPs are not a procedure to do "just to cover the bases."
 
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Winelover49

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Update...

1. Still twitching after six months in thighs and upper arms and shoulders. Although Neuro said she noticed a bit of weakness in right shoulder ( I have had issues with it and have had cortisone shots back since 1978) I have noticed no weakness. I can walk on my toes and heels, my grip strength in both hands is excellent. I have no problems whatsoever doing daily tasks like buttoning shirts, opening mayo jars, getting up from a chair without using my hands etc. My wife an RN has not noticed any weakness when we do the tests at home that the doctor has done at her office.
2. I had that dirty EMG but do not have a copy of it
3. Lumbar puncture was clear with no abnormalities
5. Hematologist says blood work OK ( had over 20 tests)
6. Chest x ray clear
7. CT scan of chest and abdomen OK
8. CT scan shows cardiac calcification. Referred to my cardiologist as I have had some shortness of breath recently. Then again it's Texas and allergy season is here big time.
9. MRI of lumbar spine normal
10. MRI of thoracic spine shows subtle atrophy of the thoracic spinal cord extending from T3 to T10 with no focal lesion and no signal abnormality. And clinical correlation is recommended.
11. MRI of cervix shows syrinx formation suspected with facet disease and some disc bulges. Neuro reviewed and said we will discuss in detail at my follow up visit.
12, Have lost about 5 lbs in the last month but then again I've been eating much less, often one meal a day and my wife says my anxiety is off the charts.

Have follow up visit with Neuro on April 8.

Not sure where this is heading.

Any thoughts would be most appreciated...thanks so much for your consideration.

Regards
 

Nikki J

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You have the right to the emg. Request the report
 

Bestfriends14

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EMGs can be dirty for many, many reasons. Rarely are they dirty for ALS. Since you have no ALS symptoms, and a clean clinical strength exam, I can assuredly say that your EMG is not an ALS EMG. It's clear that you have let your worries about a disease you do not exhibit having, to cloud your good judgement and disregard what everyone has been telling you-you do not have ALS.

The fact that you are at home, spending time you can never get back, doing strength tests to see if you have ALS shows you are consumed with this. Also, you've had forum members asking you to post the EMG since January 24th. Is there a reason you have not done so? That would give a much more clear picture of what the results are. Finally, if you had ALS and the EMG did show it, you would have found out by now.

Please post the EMG, along with the conclusion part, with identifying info removed.
 
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