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Re: At Neuro Today: Clinical weakness, atrophy, abnormal EM

PostPosted: April 10th, 2015, 6:57 am
by misterjuanperalta
DD means if not one, then the other. Not both.

Re: At Neuro Today: Clinical weakness, atrophy, abnormal EM

PostPosted: April 10th, 2015, 7:11 am
by Yuliasir
Xina, at a first glance your abnormal results indicate exactly what you have - inflammatory process - high leucocytes and some shift in the blood formula common for inflammation (high neutrofiles while low lymphocytes etc.) This means your body is healing itself! this is GOOD!!!!

All the rest seems to be normal. having something iin the low range does not mean you are deficient on B12 for example. From the population point of view, you are still withing acceptable muber of sigmas (dispersion parameter) to be considered as normal. You still belong to 95 % of population who is healthy in terms of this parameter.

Re: At Neuro Today: Clinical weakness, atrophy, abnormal EM

PostPosted: April 10th, 2015, 8:27 am
by Xina535
Ok, not so worried about B12...

The others....I was not sure what the high vs. low meant. So I have an infection or something? In my nerves? Is this consistent with neuritis? And if I am fighting it, why is my arm weak? Just did some small exercises at physio. The smallest weight and smallest exercise was hard! Is it normal here that my arm is twitching more after the small exercises? I am to repeat these at home every day.

Re: At Neuro Today: Clinical weakness, atrophy, abnormal EM

PostPosted: April 10th, 2015, 9:59 am
by Yuliasir
Yes your inflammatory picture in the blood is consistent with the neuritis (unless you did not have viral infection about a week ago or you do not have for example an urinary infection). Anyway your blood demonstrates you have inflammation process.
Neuritis literally means "nerve inflammation", so your blood formula and your overall condition are consistent.
Your arm is weak for two reasons: nerve inflammation resulted in insuffcient nerve signal supply to the muscle - then you got weakness in the muscle. Another reason is that the pain also results in weakness due to the fact you CERTAINLY would avoid muscular activity in the painful region. Weakness caused by neuritis, if part of nerves are damaged due to inflammation, may be persistent, unfortunately, but usually it slowly resolved. My sister in law had inflammation caused by compression in the wrist, and her hand was weak and she can not move her fingers, but in 2 years after physio and medication she had 100 % recovery. her pain was incredibly strong by the way. I woudl say in advance for nerves there is no big difference if they are inflammed due to compression or due to infection - inflammation is inflammation anyway, and results are the same - pain and paresis.

as for the arm and shoulder strength... I for example could not hold my hands stretched aside for more than few dozens of seconds. They become extremely painful. They twitch. They drop down. If I should keep even 1 pound weights in my hands, I probably would not las for more than 10 seconds. That is how my shoulder muscles are weak. And this is just becasue lack of excercises. So no wonder your shoulder is very weak - becasue they are gennrally very weak in contemporary people, and plus neuritis...

Most probbaly, you will have this extra weakness in your shoulder for long time. but if you would do excercises, it would result in better blood supply and in better strength restoration.

Re: At Neuro Today: Clinical weakness, atrophy, abnormal EM

PostPosted: April 10th, 2015, 10:28 am
by Xina535
This is so strange. Really. What the blood he**? First, everything was most definitely from my herniations, and now not, now I have this? I wonder if I should try to get another opinion. I guess I will wait to see how the doctor answers my questions.

PAIN - I DEFINITELY had (and still have), an intense amount of pain back in December....felt like my whole arm was black and blue....I wrote about the pain I was having, I had a meltdown. So, I plotted everything on a calendar. I figured out that the shoulder/arm symptoms actually started 2 days after that nasty lip herpes outbreak which I also wrote about on here. Then after some physio, the pain died down, but my arm felt more and more weak. Everything came and went, pain, weak, these weird sensations of heart beating loudly in my arm to where I could see my whole bicep shake from the heart beat. To burning pain and feeling of warm/hot on my skin. To pain át the slightest touch. So pain for sure. I am hoping all of that, pain and the weird sensory things totally rule out MND.

So it would make sense with my immune system blood levels that I have an infection of my nervous system. Wow. Could I have an infection coming from my brain? I am getting a brain MRI on Monday. Would they be able to see things like infection on there?

I told my physiotherapist, if he helps me get my arm back on track - the highest priority is getting the weakness improved - then I am throwing a big party and he is invited. I told him I am getting panickey and this weakness needs to IMPROVE ASAP! He gets my point. This is the most top priority OF MY LIFE! I think I will ask my doctor to write me sick so that I can focus on healing and NOT WORKING on the computer all day.

Re: At Neuro Today: Clinical weakness, atrophy, abnormal EM

PostPosted: April 10th, 2015, 12:54 pm
by Yuliasir
Xina, your plexitis might be of various origins.

When you have a bruise/blunt trauma, you have pain and inflammation but harldy infection. Inflammation is due to trauma. When you have an allergic swelling and runny nose, you have inflammation but not infection. It is autoimmune by nature.

I told only about inflammation but whether ot is due to bacteria, or autoimmune, or due to compression - I have no idea.

by no means no infection could go from your brain :) there is a thing called HEB (haemo-encephalic barrier), and usually it protects you well from any infections (except specific neuroinfections like encephalitis or rabies), but I think you do not have any signs of encephalitis :))) some viruses can locally damage your nerves (hepretic viruses for example) but hardly you have brain infection.

Why herniation for example causes pain? Becasue it compresses the nerve - and it gets inflammation. Radiculitis is an inflammation caused not by infection but by compression or by infavourable conditions making your immune system hyperactive.
Why artirtis involves pain? It is not an infection but inflammation caused by autoimmune process.

Hope those examples would help you to set aside an idea of having neuro infection. there is no equivalence between neural inflammation and neuro infection.

Re: At Neuro Today: Clinical weakness, atrophy, abnormal EM

PostPosted: April 11th, 2015, 7:45 am
by Xina535
Ok so this is an inflammation then, not infection. It's the virus inflamming my nerves? If it were due to a viral infection?

I am still waiting on the doctor to respond. In the meantime, what if my weakness in my arm gets worse and not better? This is a huge fear. I feel like my whole arm is clumsy. Can this damage continue despite the cortisone and strength exercises? If it gets worse, is that a sign of something else, like can this turn into something else....you know what?? :shock:

Example, stupid little thing I noticed. When typing, I will rest my thumbs on the space bar. I then just normally lift my right thumb up, it goes normally. When I lift my left thumb up, it wiggles/bounces a few times before it is steady. Every time I do this, it happens. It is a small sign of how actually my whole arm feels. :shock: :roll: :cry:

Re: At Neuro Today: Clinical weakness, atrophy, abnormal EM

PostPosted: April 11th, 2015, 9:02 am
by Yuliasir
as far as I understand, it is hard to determine if that is due to viral infection (something like biopsy of nerve tissue and PCR test might be required I think which is not realistic).
Regarding the weakness, I am sorry to say that, but you must not expect immediate improvement. As you may read about this condition (plexitis), it takes time (months to years) to recover, and recovery is not 100 % guaranteed. So you had to be patient and accept the idea that you may be weak for months. AND IT WOULD NOT MEAN ALS!!!!

As cortisone decreases your pain, this means it definitely decreases inflammation, so acute or subacute process of nerve damage must be stopped. But neural tissue grows extremely slowly. However if there is not too much damage, nerve (which is like multi core cable in fact) can sustain and improve its conductivity with the time, and muscle strength could be regained. some of our fellows had such experience.

Re: At Neuro Today: Clinical weakness, atrophy, abnormal EM

PostPosted: April 11th, 2015, 6:05 pm
by Xina535
We have fellows on here who have had clinical weakness and nerve damage? I hope they can chime in here if they are still around.

I am still having things going on....twitching in my left arm. Whattt is going onnnn? Is this normal that my twitching is still going on, despite cortisone? I'm still getting some hot feelings in my arm and my heart beat comes and goes.

I can accept staying weak for awhile...I am afraid of this getting worse. How far is it going to go with weakness before it can start to get better? Is the damage now done?

Also, kind of my most important question. I've read different things: cortisone, does it cause shortness of breath. When I go to take a deep breath, it can't go so deep. I've been like dry coughing when talking or laughing since the air feels "not enough". It's scarying me quite a bit.

Re: At Neuro Today: Clinical weakness, atrophy, abnormal EM

PostPosted: April 11th, 2015, 11:21 pm
by Yuliasir
I remember that German2 had experience of recovering from clinical weakness (before she had her current picture) - she was writing about that a few times. We had SuzyQ who was not being able even to stand and walk and recovered after intravenous course (I just can not remember what is was - immunoglobulins or cortilol) - and hr recovery was complete - on the physical and menthal sides.

I did not took it so I do not know if it causes shortness of breath, but if it is listed in the side effects list, it could be so.

as for your fears - I know it is hard to loose muscle strngth. This feeling that body betrays you. It is pure 100 % fear and depression. No matter what happens - I felt this with twitches, with broken hand, name it - any issue when your normal fuctionality decreases produces this feeling.

But you may have two anchors to cope with that. Anchor number 1 is that your do not need to doubt your diagnosis - you have pain, weakness, normal reflexes (which mean you have local damage without involvement of brain morot cortex) - so the clinical picture is quite clear - plexitis. Plexitis involves some weakness which is caused by inflammation. You are on the qute strong antiifnallmation treatment. This should help. But the damage is done, and becasue processes in the neural tissue are not immediate, and are tend to have a relatively large time shift, there COULD BE some worsening but then, with the physio and further antiinflammatory treatment, you will have a positive effect. Anchor no2 might be your couch, councellor, psychologist whatever you use - and you could discuss all those matter with this prson. How to live when you have the fear. What to do if you could not trust your body, etc. What to do with the weakness, how to find right place for this condition.

I knnow it is hard. I know life would never be the same.
But it might be still tolerable.

as for twitching, i remember they accompany re-innervation so they should stay with you for a while.

Re: At Neuro Today: Clinical weakness, atrophy, abnormal EM

PostPosted: April 12th, 2015, 4:00 am
by Pascal35
Hi Xina,

I am sorry for what you are going through.
20.000 Lymphozyten is quite a lot but it might be high due to cortisone.
Do you have fever?
Shouldn't the doctor prescribe you with some antibiotics?

With regards to your shoulder weakness.
Are you sure there is atrophy? Have you personally seen it?
Are you right handed? Its normal the left side always to be a bit weaker in the right handed people. 4+/5 is slightly weaker.
Also.
Since you have c5-6 herniation its logical at some point to have fibs and psw and in addition some large MUPs because its an old "issue"

When this whole thing started for me 18 months ago during my first few EMGs they were finding some fibs on my left deltoid too. They said it was due to my c5-6 herniation. After a few months noone again ever found fibs or psw... And trust me. I had done more than 20 EMGs!

I suggest you start working out your left shoulder.
Probably it became weaker because since your pain started you totally stopped moving and exercising that spot.
In 10-15 days try to visit a new neurologist and set up a new EMG. Try not to say anything to him about previous diagnosis etc...
Just let him do the job from the start.
My guess is that everything is because of your herniation. Im sure the new doctor will clear you 100%

PS - When did you have your last spine MRI? If it is more than a year then i suggest you go and have a new one too.
Honestly. In Germany the high ranked doctors are really TOP class but unfortunately the vast majority are mediocre

Regards and good luck

Re: At Neuro Today: Clinical weakness, atrophy, abnormal EM

PostPosted: April 12th, 2015, 6:00 am
by Xina535
Yuliasir wrote:
I did not took it so I do not know if it causes shortness of breath, but if it is listed in the side effects list, it could be so.


I see it on the list of side effects and it says to call your doctor if this happens. Today is my last day of 100mg, I will be taking 50mg starting tomorrow for 3 days, then tapering down to 25 then 12,5. Maybe there will be a Change with the breathing.

so the clinical picture is quite clear - plexitis. Plexitis involves some weakness which is caused by inflammation. You are on the qute strong antiifnallmation treatment. This should help. But the damage is done, and becasue processes in the neural tissue are not immediate, and are tend to have a relatively large time shift, there COULD BE some worsening but then, with the physio and further antiinflammatory treatment, you will have a positive effect.


Stupid question - could it be MND, where my muscles are losing Innervation and my Body is attacking that, trying to bring extra blood to the muscles (the heart beat), like my Body is attacking however it can to try to save damage? I have so many crazy thoughts. I will be following up with the neuro and my psychotherapist with this.

as for twitching, i remember they accompany re-innervation so they should stay with you for a while.


So this twitching, is a good Thing - like my arm is healing, or trying to heal? Now, about the twitching in my arm....it's mostly in my forearm/wrist by my Little fingers. It Comes and goes, when it Comes it's like just for a few beats, but they can be really strong, and then it goes away for like an hour or so. I will get occasional twitches in my upper arm, but it is more seldom....but THAT is where I am weak! So why the twitching in my wrist/forearm? In MND, wouldn't the twitching be in the weakening muscles more and wouldn'T they be more constant? I am trying to be Logical and believe Neuritis, it's just so hard if you have weakness, twitching, atrophy AND an abnormal EMG that has characterists of...... :shock:

Now - remember my RIGHT HAND? The atrophy and weakness I have there - which was seen by many doctors but they have no Explanation. They are giving me a brain MRI on Monday to see if there is something, but my one neuro said "If nothing Comes back from your brain MRI, you do not have ANYTHING! This is psychosomatic." Then of course, the self pay neuro I went to earlier this week found real damage. Now - I am worried with my right Hand....could this maybe be related to a Neuritis or auto-immune Thing? It has not worsened, but the previous Problems are still there.

Re: At Neuro Today: Clinical weakness, atrophy, abnormal EM

PostPosted: April 12th, 2015, 6:15 am
by Xina535
Pascal35 wrote:
20.000 Lymphozyten is quite a lot but it might be high due to cortisone.
Do you have fever?
Shouldn't the doctor prescribe you with some antibiotics?


Thanks Pascal for chiming in. I took 100mg of cortisone before the labs. I wanted to wait, BUT I really wanted to start the medicine and get relief. That is one question to my neuro on if the one Dosis a few hours before could have affected my blood. I do not have a fever, but I have described it as it feels like my arm has a fever. Last night, it felt like I had ice/hot rub on my arm, but I had nothing. I felt cool, but was warm too. And my heartbeat was in it. I have not seen a doctor since my lab results were back. I will call my doctor about it tomorrow to see if I Need anti-biotics.

With regards to your shoulder weakness.
Are you sure there is atrophy? Have you personally seen it?
No - my husband does not see it either. But the neuro did and my physiotherapist said he couldn't really see anything, but I have weak and flab shoulders/arms and the physiotherapist said that if you are not hulk Hogan, the normal Person may not be able to really see atrophy, but he trusts my neuro.

Are you right handed? Its normal the left side always to be a bit weaker in the right handed people. 4+/5 is slightly weaker.
I am right handed, yes. My left arm though, has been off for a while. Things became heavier and harder to do. Just picking up a bottle of water or something felt totally different than before, so I know there is a real Change!

Since you have c5-6 herniation its logical at some point to have fibs and psw and in addition some large MUPs because its an old "issue"
This is confusing. I have c5/C6 and c6/c7 herniations, but the Report says "no compression, no myleopathy". My normal neuro, my Hand surgeon and this self-pay neuro all said my arm Problems cannot be coming from my neck. My orthopedic, physiotherpist and psychotherpist think it's possible.

When this whole thing started for me 18 months ago during my first few EMGs they were finding some fibs on my left deltoid too. They said it was due to my c5-6 herniation. After a few months noone again ever found fibs or psw... And trust me. I had done more than 20 EMGs!
What did your neck MRI say? Did it clearly Show nerve compression?

I
suggest you start working out your left shoulder.
I AM!!! This is my top priotity. Doing the exercises my physiotherapist gave me. I see him every two days over the rest of the month.

In 10-15 days try to visit a new neurologist and set up a new EMG. Try not to say anything to him about previous diagnosis etc...
I thought about this. Weird that a Professor neurologist EMGed this SAME muscle in January and found nothing. I am seeing a neurosurgeon for a consultation on the 20th. Do you think he would have an opinion about this? Would he be able to give me a EMG? First time at a neurosurgeon...


PS - When did you have your last spine MRI? If it is more than a year then i suggest you go and have a new one too.
The cervical MRI (that showed no compression), was about 1 month ago.

Re: At Neuro Today: Clinical weakness, atrophy, abnormal EM

PostPosted: April 12th, 2015, 7:26 am
by Pascal35
With regards to your shoulder weakness.
Are you sure there is atrophy? Have you personally seen it?
No - my husband does not see it either. But the neuro did and my physiotherapist said he couldn't really see anything, but I have weak and flab shoulders/arms and the physiotherapist said that if you are not hulk Hogan, the normal Person may not be able to really see atrophy, but he trusts my neuro.
THIS DOESNT REALLY MAKE SENSE - AN ATROPHY IS AN ATROPHY AND ITS NOT AN IMAGINARY LOSS OF MUSCLE. ANYONE SHOULD BE ABLE TO SEE IT ESPECIALLY IF IT IS SHOWN TO YOU.

Are you right handed? Its normal the left side always to be a bit weaker in the right handed people. 4+/5 is slightly weaker.
I am right handed, yes. My left arm though, has been off for a while. Things became heavier and harder to do. Just picking up a bottle of water or something felt totally different than before, so I know there is a real Change!
I DONT ARGUE THAT THERE IS A CHANGE. WHAT I GUESS IS THAT PROBABLY THIS CHANGE IS A RESULT OF LETTING YOUR LEFT SHOULDER WITHOUT PROPER TRAINING OR USE BECAUSE OF THE PAIN YOU WERE FEELING SINCE DECEMBER. AN ARM GETS TOTALLY ATROPHIED IN JUST ONE MONTH WHEN YOU DONT USE IT (AFTER FRACTURES ETC.)

Since you have c5-6 herniation its logical at some point to have fibs and psw and in addition some large MUPs because its an old "issue"
This is confusing. I have c5/C6 and c6/c7 herniations, but the Report says "no compression, no myleopathy". My normal neuro, my Hand surgeon and this self-pay neuro all said my arm Problems cannot be coming from my neck. My orthopedic, physiotherpist and psychotherpist think it's possible.
I WILL TRY TO EXPLAIN IN ENGLISH (NOT MY MOTHER LANGUAGE) AND I HOPE I DO IT PROPERLY.
AN MRI IS TAKING A "PHOTO" OF THIS SPOT IN ONE SPECIFIC MOMENT. SO WHEN YOU SLEEP, WORK ON PC ETC. THERE MIGHT BE A COMPRESSION. THE AREA IS VERY NARROW SO ONCE YOU SEE THE "BONE" CLOSE TO THE SPINAL CORD ITS OBVIOUS THAT THERE WOULD BE A COMPRESSION.

When this whole thing started for me 18 months ago during my first few EMGs they were finding some fibs on my left deltoid too. They said it was due to my c5-6 herniation. After a few months noone again ever found fibs or psw... And trust me. I had done more than 20 EMGs!
What did your neck MRI say? Did it clearly Show nerve compression?
NO. THE EXPLANATION I GOT WAS EXACTLY WHAT I POSTED TO YOU IN THE PREVIOUS ANSWER

In 10-15 days try to visit a new neurologist and set up a new EMG. Try not to say anything to him about previous diagnosis etc...
I thought about this. Weird that a Professor neurologist EMGed this SAME muscle in January and found nothing. I am seeing a neurosurgeon for a consultation on the 20th. Do you think he would have an opinion about this? Would he be able to give me a EMG? First time at a neurosurgeon...
I SUGGEST YOU GO BACK TO THE SAME PROFESSOR. IT DOESNT MAKE SENSE THAT HE DIDNT FIND ANY SPONTANEOUS ACTIVITY AND THE GUY A FEW MONTHS LATER FOUND BOTH SPONTANEOUS ACTIVITY AND CHRONIC DAMAGE.
I WOULD FIRST GO AGAIN TO THIS PROFESSOR EXPLAIN TO HIM THE SITUATION AND LISTEN TO WHAT HE HAS TO SAY. FOLLOWING TO THAT YOU SHOULD ALSO VISIT A NEW NEURO AND JUST DESCRIBE HIM THE SYMPTOMS AND MAKE HIM FEEL THAT HE IS THE FIRST ONE YOU EVER WENT.
IM TELLING YOU AGAIN. THE HIGH RANKED GERMAN DOCTORS ARE REALLY TOP CLASS BUT THE "NORMAL" DOCTORS ARE REALLY REALLY REALLY DANGEROUS AND AVERAGE.
I WOULDNT GO TO A SURGEON BECAUSE HE WILL MAKE THINGS IN YOUR MIND MORE COMPLICATING.
TRY TO RESOLVE YOUR MATTER ASAP WITHIN THE NEXT 10 DAYS. IF YOU ARE TO SPEND SOME MONEY DONT THINK ABOUT THAT JUST TRY TO EASE YOUR MIND AND MOVE ON WITH YOUR LIFE.

Re: At Neuro Today: Clinical weakness, atrophy, abnormal EM

PostPosted: April 12th, 2015, 7:40 am
by Yuliasir
Heartbeat feeling is not becasue of pumping more blood, as far as I understand. It is rather due to your sensory nerves have lower threshold of firing and you feel your heartbeat which normally you should not feel.