Back from Neuro - PNP

[German2]

Yes, Yuliasir, you are right.
All the mentioned tests are reperformed. I went to the same hospital which did the same examinations one year before.
The regular findings were two muscles with big amplitude, one of them slightly polyphasic. No spontanuous activity. Whatever that means. The latter I understand.

With the outcome they repeated what every report of mine is saying: somatic disorder. My neuro believe it is not.
They copied every small thing they can gather about my family background for social anamnestic. I never should have mentioned-

[muppetdog]

I am pretty sure somatic disorder does not cause hashimoto's syndrome and anti-ganglioside antibodies. From what it sounds like, you are in the clear for any MND. Congratulations!!! The bad news is you probably still feel like crap and don't know why. There comes a limit to what they can test for and do medically. When you get there they tend to go with the "all in your head" diagnosis.

[Yuliasir]

Then you may be sure it is not MND at least.
Neurology is not limited to MNDs. Diseases are not limited to neurology. Hashimoto disease may affect your mood and cause generally crap feeling (Iremember one lady who was working with my mom - she was feeling bad and looking terribly, and barely was able to do her job but after treating her thyroid she become quite alive again).

What I mean is that Ok, imagine you will get ALS diagnosis from them. So what next? ALS is incurable for now. Ulnar syndrome is curable (and you had this proven already before). Hashimoto is also controlled disease. Depression is controlled and quite treatable. Antibody analysis is not conclusive at all and often could be misleading. So you need a program to move for all three directions and with the time being you must feel better. *beep* happens, people become mutiply sick, countries get in war, the whole world may get in disasters but... dum spiro spero, unitl we did not died, we may feel better still. Sorry for such emotiona words but... Experienced specialized hospital says you do not have motor neuron disease but mechanical trauma. Specialized ER says you have no MND. Then you must look for just some other reasons for your condition.

[German2]

Dear both,

Yes I feel like crap now. They did me the EMG just in one limb. And in the neck. In this limb they found two high amplitudes, but just one corresponding with the sulcus ulnaris syndrom. I don't have a clue, why they did not test me in another limb to see wether those amplitudes are normal or not. I agree with you Yuliasir.Why should the diagnose me with MND if it is not treatable anyway. They just did no further testing. I am so angry and anxious right now, much more than before the clinic.

[Pascal35]

A usual issue with the doctors is that they rarely speak and explain their thoughts... This creates higher levels of anxiety to ourselves especially to those who like to make google researches about everything.
My question to you is: Did you explain to them your fears? While they were making the EMG why didn't you ask them to make all 4 limbs?
If you still have so many unanswered questions then it is logical that your level of stress will go high again.
I read there is an ALS clinic in Hannover. I suggest you arrange an appointment with them. Before that try to keep notes of ALL your questions and every small important or not thing that disturbs you. Once you are there you ask them everything and i am sure you will get proper answers that will ease your fears and stress

[German2]

Dear Pascal,

yes, I exactly agree with you. I cannot follow their thougts. I have antibodies against my nerve system so it would make much more sense to me, that it is all from a polineuropathy. They don't explain to me why it is not that. Because bothsided SUS is suspicous somehow to me.

The reason why I did not ask to do all my limbs...I was too nervous. Sounds weird but it is just as simple as that. Firstly I thought, if they do my neck, they would surely pick up anything weired after 2 years of symptoms and 14 month of twiching. They were not really alarmed about MND (though it was on their list), because I don't have twitches to show. And they cannot be stimulated. It is just some popping here and there and not always. The only place where I can whatch by myself is my right foot cave. But it is not always there...

It is really unsatisfying for me, to be in the "psycho corner" again. On monday I will call again the responsible doctor. And ask some more questions.....

[nrwtwitcher]

Dear
I am really scared once more. German, I am happy for you, that you do not have any evidence pointed to MND! It has been ruled out to 100% from the german main expert in that field.
But my problem ist now: They ruled ALS out because there are not any twitches to show?? I have read a lot of times in this forum that ttwitches are not a sign of the horrible disease.
For example: I can show my twitches all the time to any doctor... they can also triggerd without any problem. This statemant is horrilbe for me now.
Are there any thoughts about it to reassure me ? Thank you all.

[nrwtwitcher]

I have visited 3 specialized neuromusculare centers in germany because my twitches get worse over the last 12 months. Not better, not a bit. The doctors told me the following things regarding to twitching: Twitching without clinical weakness is no sign of MND. Fazciculations on the EMG is no sign of MND. Twitching without weakness longer than 4 weeks (not months or years!) points away from MND. They told me that it is not important if twitches could be shown or provocate or not.
So this could reassure me. But I am so anxious, I am scared and I am tired from this twitching. And if I read things like that... I am doubting again and again because I am very unsure and vulnerable because of this twitching and cramping.
I wish I had not read this statement... sorry...

[German2]

Dear NRWtwitcher,

as I told you before, I have atrophie and weakness in left hand. This is another situation. You are already diagnosed with BCFS . No weakness. No atrophy...
And of course I also have twitches. They were simply not visible in EMG. But therefore the degenarated muscle...Nobody told me, that twiches are an indication for MND. No one. As I said.

[nrwtwitcher]

ok I understand. Sorry, my panic is sometimes out of control.

[muppetdog]

German2 -

I hear what you're saying about not being able to reproduce the twitches for the doctors. I have only been able to show one neurologist a twitching pinky finger. I have never had them show up on an ENG(I have had 2).

There is a difference on the board between people who are just so anxious and depressed that they twitch and think they have ALS (which they don't), and the people who have something else, that is BENIGN, that causes the twitches. Most of the time no doctors can ever find anything wrong. You have thyroid problems, my internist also had thyroid problems (low thyroid/hasimotos) and she felt like crap and had a ton of buzzing before they got the treatment right. Thyroid problems can cause twitching and other stuff. The weakness, soreness, joint pain, don't you think that could also be caused by something that is autoimmune? Doctors don't have a good grasp on the total immune system yet. They search for new antibodies every day!!!! If you have one autoimmunity, you could have another. Not an MND. but something that might wax and wane and cause weakness for months or pain or fatigue or who knows. Something that they might not be able to find a cause for and tell you that it is all in your head.

I know you must be frustrated, I am, and I know we don't have the same things going wrong with us, but keep looking and try to find something that works. Trust the doctors that said you don't have an MND. Look for something else. Did they rule out something like multifocal motor neuropathy? That is treatable and immune related.

[German2]

Dear Muppetdog,

that is funny because with twitching pinkies (and a lot of pain in them) my story has begun two years ago. S.t. I am twiching in my ulnar region, too. But in general it is here and there..Hotspot under right foot and sometimes calfes. I am pretty sure, I have s.th autoimmune. S.th similar happened to me 16 years ago, after a bad virus. Whole body twichting, joint pain, fatigue and a lot of other crap. Nothing was found. It lastet 1,5 year until everything was right again. (Dr. Google was not in place that time)

MMN is not causing sensitive issues as I have..It is painless like MND (and most of time asymmetric). They excluded PNP in general though it is not explicitely mentioned in my report. I personally think it is something inflammatory causing compression for my nerves. It is not my first compression syndrom in the last years..

I feel like crap because I know my story has not ended yet. I still have to check, what's going on. Double sided ulnar nerve compression...without any cause? In America there would be a desease called "liase to pressure" (or similar). In Germany it is not a desease but a syndrom, the doctor told me. I don't believe it is that. I have to make new appointments with experts for autoimmune pnp. For I believe it is s.th. like that.

[Pascal35]

Dear Pascal,

yes, I exactly agree with you. I cannot follow their thougts. I have antibodies against my nerve system so it would make much more sense to me, that it is all from a polineuropathy. They don't explain to me why it is not that. Because bothsided SUS is suspicous somehow to me.

The reason why I did not ask to do all my limbs...I was too nervous. Sounds weird but it is just as simple as that. Firstly I thought, if they do my neck, they would surely pick up anything weired after 2 years of symptoms and 14 month of twiching. They were not really alarmed about MND (though it was on their list), because I don't have twitches to show. And they cannot be stimulated. It is just some popping here and there and not always. The only place where I can whatch by myself is my right foot cave. But it is not always there...

It is really unsatisfying for me, to be in the "psycho corner" again. On monday I will call again the responsible doctor. And ask some more questions.....

I totally understand your way of thinking. On the other side what i would recommend is to take a benzo pill 1-2 hours before any of the tests. It would make you relax and be more concentrated and listen to what they are saying and not to what you are afraid to hear...
I also suggest that you visit them and talk personally not via phone - You could get better feedback... My suggestions are simply based on the way i am thinking

[German2]

Dear all,


As my stay in hospital was very unsatisfiying and left me with a lot of questions, I went to a Prof. of Neurologie, private based. He reviewed my report (dobble sided ulnar nerve syndrom), questioned it, and told me, the referring muscle was not even tested in the hospital (wow!!).
My EMG in the hospital was not clean though.
here the details.
viewtopic.php?f=4&t=20911

He did all the electrophysical testing again. Clinical was totally fine, strength test also. He did not find any weakness, normal reflexes, no changes to my visit 3 month ago. Just positive Hofman-Tinel sign above sulcus as already reported. Which means, my numbness in pinky can be triggered at my elbow.

He did NCV and EMG of the referring sulcus muscle which showed slight spontanous activity. EMG of my foot muscle which I suspected to be slightly atrophied was normal.
His dx is a minor sulcus ulnar nerve syndrom left side, but definitely not right side.
He added to my question "definitely no MND". After two years of symptoms I would have come in into a wheel chair otherwise. And also in the last three month since my last visit would have been changes to the bad.
I have symptoms for two years and twiching since 14 month.

But there is another finding in the hospital report: Widening of liquor rooms frontal within two years (meaning brain atrophy). And he thinks this is suspicous. But I did not have the xray cd..*beep*!
This was an unexpected finding and now I have to follow that trace instead.

I went to hospital for checking the one thing and come out with findings of another, unexpected one

[German2]

Hi there,

today I went to a neuro as an emergency case. Since one week I have this buzzing in my left foot and my legs starting to feel so weak. But not just my legs...I feel so completely weak and I was looking for some answer...He did some reflexes at my legs.. They were low this time (normally middle brisk) but ok, he said. Vibration test was also fine to his opinion. No restrictions. No PNP. He did not see any atrophy in my hands...And he was not interested in my shaking thumb.. He wrote a very long report about things he did not even testet and I was immediately in the "psycho corner". I should change my medication (antidepressants). That's it. He does not think of any MND due to my age (44), my gender (f), the development. I could not show any fasciculations. I never could. They just appear here and there so that I by myself can't watch them. I just feel them. And also my hotspot is not active when I like to present...What my anxiety is concerned, I already tried what I could. Was in psychosomatic clinic, seeing a councellor (which is a very bad one and has just a one per month appointment), take my medication....everything I could do. This is not the way bringing any relief to me..Maybe I am just already too much into the story after two years of symtoms...I don't find the way out. I am into twiching since 14 month. And I am telling myself...just a half year further. Then I might be over it..who knows...