At Neuro Today: Clinical weakness, atrophy, abnormal EMG

[Xina535]

Hi All,

I know the atrophy isn't making sense. I am seeing BOTH neurologists this Thursday for FUPs. The neuro who diagnosed me with plexus nuritis and the professor neurologist who said I had psychosomatic illness in my left arm.

In the meantime, I had my brain MRI today, with and without contrast. The radiologist pulled me in for a quick discussion and said he did not find anything in my brain that would explain my left arm problems or my right hand weakness/issues. I told him about my previous MRI of my neck which showed herniations, then he scrolled to some pictures they took automatically of my cervical neck with the brain MRI and said that I indeed have a significant herniation. He said it's not completely compressed but it is compressed and in his opinion would explain my arm problems. Especially since it is compressed to the LEFT. Thing is though, he can't write that in his report or give me those pictures because the referral from the doctor was for brain MRI only. But it was helpful to hear that from him for sure. I will bring that information to the neurologists too.

About the sensory nerve and I've been reading that I should have sensory nerve affection and my nerve conduction in my left arm should show abnormalities in plexus nuritis and also I guess in herniated discs, but none of those tests were done, so does anyone thing it would be helpful to get those done when I see the neuros this Thurs?

[Pascal35]

Great news
I'm happy that my point is finally making sense
Herniation is the answer.
I hope i could hear the voice of logic for myself too...

Regards

[misterjuanperalta]

I have the same type of compression or bulging in my neck affecting my right arm/hand. It's also at the left side. If this helps, I am glad.

[Xina535]

Pascal - thanks, I sure hope it is the answer. Thank you again for your input and help!

Misterjuan... - I am sorry to hear about your compression. How bad was it, did you have real nerve damage from it?

I finally have some relief in my arm today after physio last night. Less pain and twitching today. The weakness is still there, it feels lame, but it is a bit more stable. I am relieved for sure.

My physiotherapist said he is just going to treat me as if I had these herniations, but wonders and thinks it could be possible that the herniation CAUSED neuritis - like it aggravated the nerve and inflamed it. Don't know if that is possible...

[misterjuanperalta]

Here is an excerpt:

MRI of the cervical spine performed demonstrates diffuse degenerative pathology with disc bulging seen at C2-C3, as well as the C4-C5 and a left-sided disc bulge seen at C6-C7. This does cause neural foraminal narrowing bilaterally at C6-C7. There is no intra-parenchymal cord signal changes or cord compression appreciated.

[Xina535]

Ok, so here I am confused again. Mine also said no compression, but my body sure as he** didn't!

Did you get these things, from the neck problems:

Pain in arm/hand
Clinical weakness arm/hand
Abnormal EMG/s in arm or hand
Twitching arm/hand
Atrophy in arm/hand, or other places
Doctors telling you the neck is not the cause whole some said it was the cause? Confusing explanations.

Definitely having arm pain today. I always know that is a bad sign because other symptoms follow.

[misterjuanperalta]

I get a bit of all of what you get. Symptoms worse in some positions. You are more advanced in stage than I am.

[Ghayes420]

Pain in arm/hand --- very much so, yes
Clinical weakness arm/hand --- no, not at all
Abnormal EMG/s in arm or hand. ---- non beside low grade, simple morphology fascis in tricep
Twitching arm/hand -- God yes
Atrophy in arm/hand, or other places ---- no, after 3.5 years, none

Sounds like you have a neck, spinal issue that is non-lethal. Welcome to BFS. No solid dx and conflicting opinions muddies the waters. Best to stick with a neuromuscular specialist and go from there Xina.
Good luck. This isn't at all a typical MND presentation and not an atypical one either from my studies.

[Xina535]

I get a bit of all of what you get. Symptoms worse in some positions. You are more advanced in stage than I am.

Advanced stage - meaning, the herniations are causing nerve damage and this issue in my arm? I am scared that the damage will get worse or permanent! I did feel some improvement in strength, but the pain...despite the cortisone, keep coming back.

Pain in arm/hand --- very much so, yes
Clinical weakness arm/hand --- no, not at all
Abnormal EMG/s in arm or hand. ---- non beside low grade, simple morphology fascis in tricep
Twitching arm/hand -- God yes
Atrophy in arm/hand, or other places ---- no, after 3.5 years, none

Sounds like you have a neck, spinal issue that is non-lethal. Welcome to BFS. No solid dx and conflicting opinions muddies the waters. Best to stick with a neuromuscular specialist and go from there Xina.
Good luck. This isn't at all a typical MND presentation and not an atypical one either from my studies.

Thank you - so you have pain but no weakness. The weakness and abnormal EMG are scarying me the most. He mentioned atrophy in my shoulder but we don't see it. I am following up with him tomorrow AND I have a consultation with a neurosurgeon on the 20th. Should I ALSO visit a neuromuscular doctor? I haven't been to one of those yet.

[misterjuanperalta]

I believe so, but I'm not a Dr. For it to get to your level, it would have to be more advanced.

[Xina535]

Ok - the FUP with the neuro was today. His answers below. So the questions I have, in your opinions:

Should I also visit a MND doctor? (I am seeing a neuro surgeon on Monday as a consulation).
Do you agree with what the neuro said about it being the cortisone that helped me in 1 week and also how this Points away from MND?
Does it make sense to you that he said the herniation is "too low"?
Does anyone know a good "neuropathy/neuritis" Support Forum?
Any experiences to share with gabapentine?

At physiotherapy, there were Points the therapist could absolutely not touch or I yelled in pain. It's pretty much ANYWHERE on my spine (Center) in the C5-C7 Areas. He didn't like press hard, just tried to immobilize, but even just a Little pressure was enough.


Summary with doctor:


MRI of brain was normal but the radiologist said there is a significant herniation to the left at C6/C7 and explains my arm problem. Could this be the reason for arm in your opinion?
Doc: Good that nothing is there, did not think so. This is not from your neck because the herniation is too low it to cause deltoid weakness/pain, should be C4/C5 area. Also because your reflexes are normal. If it were due to my herniation, I would expect a diminished reflex. I believe they are separate processes and not related.


What about my right hand? No one can explain what is going on there. It has "shrunk", has sensory things that come and go and this weak grip.
Doc: THIS could very well be something coming from your neck. Keep a journal how it is day to day, especially when you start gabapentin, to see if there is improvement. We should control this again in 6-8 weeks.


Cortisone: having bloat and breathing issues.
Doc: This can happen. It can be due to the other ingredients in the pill/brand. Some people change brands and then the shortness of breath problem stops. The water weight should fall off after you stop cortisone. Diuretic is not recommended, since you are going to start gabapentin and have other meds. Just wait it out.


When do I start Gabapentine?
Doc: Start gabapentin now, as you are weaning off cortisone
Day 1 - 100 mg, 3 times a day (7:00 – 14:00 – 22:00)
Day 2 – 100mg, 100mg, 200mg
Day 3 – 200mg, 100mg, 200mg
Day 4 – 200mg, 200mg, 200mg
Day 5 – 200mg, 200mg, 300mg
Day 6 – 300mg, 200mg, 300mg
Day 7 – 300mg, 300mg, 300mg
(and continue this – but keep a journal about how things change/improve/don’t improve/side effects)

Expected side effects: drowsiness, dizziness, shakiness
This is safe to take with your other psycho meds.
You should expect to have less nerve pain and nerve symptoms in 1 week after starting gabapentin.



Lab results review:
Doc: B12 is perfect.
The leucocytes and neutrophile elevations are expected changes if you took cortisone.
The monocytes – I can’t really explain them, but they are not alarming high. It’s one of those things where you can take a person off the street, take a full blood profile at any time, and some value will come back abnormal for some reason.
Your TSH – thyroid is a bit on the low side. I would like to control that again in 3 months.

ANA results are in:

Doc: Results are a mix of negative and positive. Like your other ANA values, this is hard to discern. Many doctors would take this and keep going to try to figure out. Many take the clinical picture into perspective. Could there be something auto-immunue/inflammatory, yes, but it may not ever be a clear picture. There could be false positives. These values may just be “you”. We do need to control them again though at 6-12 months. If it is the same, again at 12-24 months. If the same, again in 5 years.

But this could be a reason behind developing neuritis, we must not lose sight of it.


To all of the EMG/ALS questions, he said:
[The damage and reaction in the muscle is the same or similar for any nerve damage. EMG says it’s damaged, but not WHY. That is where the clinical picture comes in. You definitely have NEUROPATHETIC PAIN. You described it as:
Stabbing
Burning
Pulsating/throbbing - this heartbeat you describe, is related to neuropathy
Deep penetrating
Tingling

This is consistent with NEUROPATHY – which is what a neuritis is.
Your nerves were attacked (why is still outstanding, but leaning towards an inflammation/infection). The fibers were damaged. Think of a big cable which has lots of little cables in it. When the outer cable fiber gets ripped, stretched, whatever, it will leaves gaps where signals from the cables inside will misfire. That’s why you feel it strong here, not here, comes and goes, sometimes into your fingers. The twitching makes sense here because of the misfiring, your nerves will twitch. The gabapentin helps to wrap up these gaps.

Not ALS because:
These pains/sensations, especially how long you’ve had them
Your age
The location of affected area
Your reflexes are normal

If ANYTHING bad, it would be more along the lines of MS since that has sensation problems and different location sites. But this is ruled out now as well.

(He performed another strength test)

Ok – so here, you have normal strength again. Last week, I could push your arm all the way down, now it is hard to push down. This is a good sign. Let me be clear: the amount of physio and work-out sessions you’ve had did not help this get better so soon. It is the cortisone. The physio and working-out will take time. With better strength and less pain (overall) after cortisone, I expect you to get better from here. By summer, you should be way better off than now. You may have good and bad days, but I expect the good days to be more and more in the next days. Keep a journal.

Now, I don’t want to scare you, but if your right arm starts acting up or you get worse, then we need to start looking at what could be going on. I don’t expect this to happen, as I feel the sickness/illness part is over (not active) but the symptoms and recovery is still in progress. But as any doctor, I can’t see into the future. But here again, in ALS, your strength would not have come back, so please don’t be concerned about this.

THIS LAST PARAGRAPH IS THE ONLY STATEMENT GOING THROUGH MY HEAD CONSTANTLY NOW - OVER AND OVER AND OVER AGAIN. I am going to constantly pay attention to my right arm now.

[Scboy]

Xina535,
I've read your history and ALS should be far from your mind. I know it is so difficult to be objective on yourself, but you have had this for some time now. Super bad things don't hide for long and you would know by now. You have something obviously and I hope it heals soon, but it's not something that's going to take you down. Stay positive!!!

[Xina535]

Thank you - it helps to hear that from others, it helps me get out of this tunnel persepective and look at the whole picture. I am still so uneasy, though. I am not happy about the sensory symptoms/pain or location of my shoulder being the reasons why this is not MND. I've read so many stories and seen too many you tube videos....my own fault.

[Xina535]

NEW QUESTION

If gabapentin has been helping with my pain - good sign? That this really is a neuropathy/neuritis - whatever? I've taken 3 doses so far and have less pain.

I am of course still open for opinions and tips on the other questions above.

[Yuliasir]

I wonder how could it be a bad sign if a drug designed, among other, as neuropatic pain killer, helps you with the pain ))