Opinion from 3rd neuro

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Opinion from 3rd neuro

Postby Xina535 on August 8th, 2014, 4:27 pm

Hi everyone,

I went to a 3rd neuro due to the pain and lameness in my left leg and for an evaluation on why the thumb/snuff box skin/area on my right thumb is getting smaller/sinking in. I asked my primary doc about it and she said to go to the neuro. Because I couldn't get an appt at my usual neuro until end of Aug, and I am leaving the country for 6 weeks on 16-Aug, and wanted as many answers and any possible treatment before I go, I went to a 3rd neuro who takes patients who will pay themselves, and they get faster appts. I had my appt on Tuesday, and it cost me 600€. His report is below. I am happy about many things, but confused and sad about others, and am hoping someone on here can help clarify.

The report lists my history of having twitches for a year, leg pain that got better with physiotherapy, my right hand issue, panic/anxiety issue and some tests I've had (like clean EMG in May). Also mentions that acupuncture helped my leg and I am going to get 2 cortisone shots next week for it from my orthopedic.

His findings after checking me out (his words in bold, my thoughts normal text):

No meningitis, pupils are identical, light reaction is fine, no uncontrolled eye movements, other brain nerves are fine.

No sign of para thesis (numbing), muscle tone even everywhere.

Hand/thumb joint muscle thinned but without strength loss.

Yes, my overall strength is there, but the dexterity issue with my right thumb exists (where the thinning is happening). He and my primary doc see the thinning....so if there is thinning, but full overall strength is there, is there any concern? See Tinel test below.

No sensitivity issues.


He used a word: Eudiadochokinese , and said "both sides"
which I could find means this in German:

Eu|dia|docho|kinese
normal diadochokinesis
das ungestörte Wechselspiel zwischen Muskeln gegensätzlicher Wirkung, d.h. zwischen Agonisten u. Antagonisten, bei rasch aufeinander folgenden gegensätzlichen Bewegungen; s.a. Adiadochokinese, Synergie.

Which I think means normal muscle movements?? (Anyone know)?

No indication of dysautonomia

Tinel test on right hand is positive
(which I found means this:

http://en.m.wikipedia.org/wiki/Tinel's_sign

So, here, can the positive Tinel test mean something bad if not carpel tunnel?

Lasegue test positive in left leg

Otherwise all normal.



He performed a nerve conduction and sensitivity test on my right hand

A sensitivity test on both right and left legs (for comparison)

A nerve conduction test on my left leg

All normal, including amplitude

His summary
Clinically, there is an sciatic nerve root irritation (left leg) which is dependent on movements, but without neurological deficits

Electrophysically, all tests were normal, which indicate, along with previous neuro tests, that all neuro system diseases can be ruled out at this time. We recommend physiotherapy. We believe that the symptoms are most likely tied to the known panic disorder, rather than anything neurological, and therefore highly recommend a more intense psychotherapy program.

"At this time" - I know he can't say that I won't ever get it, but it makes me wonder if my docs are talking to each other and they want a more intense therapy for me.....to prepare me for the day when I may get that diagnosis, because they think it may happen? Not likely....I'm such a paranoid mess.

Diagnosis:
Panic/anxiety disorder
Somatic disorder
Sciatic syndrome in left leg
*


Additionally, I asked these questions, and he answered as follows:

The EMG I had was in one place in left leg and in one place in left arm. Is that enough to rule out MND?
Yes

Do any of my symptoms have anything to do with neurology, meaning, do I need to ever see a neurologist again?
Nothing is neurological, no more neuro visits unless your doctors advises
*but isn't sciatic nerve issues a neurological issue (from diagnosis above)?

You want to do nerve conduction tests, but I understand that the EMG will tell you more or if anything is wrong with my muscles.
Actually, the nerve tests will tell me more, and if there are any abnormalities, we can do an EMG.

You say I need immediate psychotherapy, but I am sure you know that in Germany there is a 3 month waiting period.
I know. In Düsseldorf, it's about at 9 months now. It is sad and unfortunate. I have at least 5 patients just like you PER day, and I can't treat them. They have no neurological issue or diagnosis so I can't treat them, and I can't do anything for their therapy needs. (He gave me some tips on talking to my primary doc and insurance company).

Other notes:
My reflexes were normal

I asked for an EMG but in my right hand, since I was a self pay, and he said no for 3 reasons;
1) the tech is on vacation
2) if she is back, he highly recommends me to not get one, because it won't help me and I'll go to the 4th and 5th neuro.
3) if I still insist on one, he would not order it did to personal reasons related to #2, so I would have to find another neuro to order it

He said that psychosomatic symptoms and Problems are very real, and often causes back, neck, sciatic, and many other Problems.

Other thoughts:

I am very happy/relieved because:

1) my nerves may be irritated, but they are not damaged or dying

2) I have no neuro diagnosis and do not need to go to one again

3) I know I am not the only one (feel sorry for all of us, but way much more sorry for those with a bad diagnosis, of course)

4) I heard that I need more intense psychotherapy, mainly happy here because this message can help my primary doc to push my insurance company for a more acute Treatment

5) Have more answers about my leg, and it's been Feeling better since acupuncure, so I am hopeful for the cortisone shots

I feel bad because:

1) I wasted his time and took away time from a really sick person who needs this doctor's time WAY more than I do!!! I feel really really bad. This feeling overwhelms me more than my anxious feelings right now.

2) I paid 600€ for basically nothing, and am realizing that this fear is getting way out of control, so I hope I can get in somewhere for help as soon as I get back in 6 weeks.

3) I still don't know what to do about my Hand? Is this a Primary doc Problem, ortho Problem, I am pretty sure I should get an xray, the neuro did advise of positive Tinel...
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Re: Opinion from 3rd neuro

Postby Xina535 on August 8th, 2014, 4:49 pm

I found from the Wikipedia site that Tinel is tied to Hoffman's Sign and Hoffman's Reflex which is Babinski Reflex :cry: :?: :? ....I am confused at the differences and I briefly looked it up, got scared, and then stopped.
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Re: Opinion from 3rd neuro

Postby German2 on August 9th, 2014, 4:38 am

Dear Xina,

I really understand how you feel. I share your feelings.
I also had a self paid neuro appt. which lead me to almost nothing. He said: no MND, no PNP. Just nerve conduction test, reflexes. No EMG needed. All normal.

My neuro thinks, it is PNP but how can this be with normal reflexes?

I have also a declined hand muscle, between thumb and forefinger and interossei. In my case thumb starts to feel weak. The crazy thing is, that this happened also a year before and went away due to training. My neuro and GP now see atrophie..

What I would recommend for you is not to visit the next local neuro but to make an appointment at a neuro muscle center at university. I have visited more than one. The leading one for MND in North Rhine-Westphalia is Bochum (but there is also Aachen, Bonn, Düsseldorf - which is not so highly recommended, but they made the most extensive tests with me). I had an appt in Bochum in April, MND was ruled out. But I have a new appt on 18th of August, due to my Gangliosid-Antibodies because this is indicating that there is indeed s.th. wrong.

In those centers you have all the experience with the nasty deseases and you can get a bit more reassurance then with a local neuro. I made the experience, that everyone has a different opinion.

And what I can tell you regarding psychological therapie: Take your time and visit more than one. I have visited 3 - had some probatory sessions. Then I choosed one but it did not improve anything up to know. If I could switch, I would. If you want to know more about some practical ways, just write me an email. I have some information.


Otherwise I wish you a pleasant holiday. Try not to think about all that stuff (ok. a challenge, in which I failed ;-). And think about an appt with the experts.

take care, German
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Re: Opinion from 3rd neuro

Postby Pascal35 on August 9th, 2014, 9:17 am

Hi Xina,

Next time i am in Duesseldorf we have to meet!
If you read my posts you will realize that your doctor was right in many of his suggestions...
Don't go to other neurologists... I ended up visiting over 20 doctors and over 20 EMGs! Its madness and won't give you answers.
You will get one reassurance and then you will create another insecurity to yourself about another symptom.
Hoffmans sign doesn't have to do anything with Babinski. Hoffmans can be positive due to stress.
In January i also had it positive but then was disappeared again. Now i think its back.

Maybe what happens to your right finger muscle is anatomical. You can't have muscle loss and at the same time normal strength.
Left leg issue probably from a herniated disc which several people got.. At any case i wish you all the best and i believe that if it was something serious the doctors would have alerted you
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Re: Opinion from 3rd neuro

Postby Xina535 on August 10th, 2014, 9:23 am

OMG thank you both for writing back!! I feel so much better that you took the time to read and respond with your thoughts.

German, I am sorry the same happened to you with self-pay.

I don't have overall weakness, but I have weird coordination issues around my thumb. I also pain, in many places. I can't move my wrist backwards even a little without having pain. If I do not wear the brace my ortho prescribed me, I have pain. With it on, no pain. I see my primary doctor tomorrow to review the neuro visit and my hand, and then I see my ortho on Tues for the first cortisone shot in my lower back for my leg. I will ask them both about my hand and how the pain increased this weekend. Both doctors do see the indents/thinning around my thumb knuckle.

The university - how do you make an appointment? Is it also self-pay? Do you need a referral from your doctors? I am not sure I will go to another neuro at this point, but if my symptoms get worse and if my primary doctor believes I should go, then maybe I will try the university.

And it is so hard with psychotherapy. I had two during the last year, both were not for me, and one of them was not a doctor. I do not feel good seeing someone who needs to send me to a different psychcologist for them to write me medicince because he can't. The other doctor has no idea what is wrong with me, was not part of my therapy sessions! I am going to talk to my primary care doctor tomorrow about what she thinks I can do, as the neuro requested that my psychotherapy treatment is immediately intensified. Would this mean going to a clinic or a kur or something? I don't know. I know whatever it is, I can only start when I am back in Germany at the end of Sept. And thank you, I will definitely try to have a nice vacation. I wish you all the best with your upcoming appts!

Pascal,
Yes, send me a PM if you are in the Düsseldorf area! I am really really really going to try to not to to any more neuros. He and you are right - really. I will never be satisfied. I PLAN on going only when my primary care thinks I need to go back. I do not feel good at all, feel actually sick to my stomach, when I realize I took up valuable time from the neuro which could have been used for him to help other seriouslly ill people. He said he has patients like me 5 a day! That's half his day, I would think. Meanwhile, people who are really sick are waiting for appointments...
Thanks for clarifying the Hoffman's sign. It technically says 'Tinel' sign, not the Hoffman's sign, but I realized they are connected. I also appreciate your words about having muscle loss but still having normal strength. I was thinking that, but was not sure. I also believe the neuro would have told me that I should come in for a follow-up at a certain point if he had any doubts.

My leg issue is not herniated disc. The MRI was ok. But both the ortho and neuro said that there is a nerve root irritated somewhere. I hope for some relief from the cortisone.
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Re: Opinion from 3rd neuro

Postby Xina535 on August 10th, 2014, 9:25 am

OMG thank you both for writing back!! I feel so much better that you took the time to read and respond with your thoughts.

German, I am sorry the same happened to you with self-pay.

I don't have overall weakness, but I have weird coordination issues around my thumb. I also pain, in many places. I can't move my wrist backwards even a little without having pain. If I do not wear the brace my ortho prescribed me, I have pain. With it on, no pain. I see my primary doctor tomorrow to review the neuro visit and my hand, and then I see my ortho on Tues for the first cortisone shot in my lower back for my leg. I will ask them both about my hand and how the pain increased this weekend. Both doctors do see the indents/thinning around my thumb knuckle.

The university - how do you make an appointment? Is it also self-pay? Do you need a referral from your doctors? I am not sure I will go to another neuro at this point, but if my symptoms get worse and if my primary doctor believes I should go, then maybe I will try the university.

And it is so hard with psychotherapy. I had two during the last year, both were not for me, and one of them was not a doctor. I do not feel good seeing someone who needs to send me to a different psychcologist for them to write me medicince because he can't. The other doctor has no idea what is wrong with me, was not part of my therapy sessions! I am going to talk to my primary care doctor tomorrow about what she thinks I can do, as the neuro requested that my psychotherapy treatment is immediately intensified. Would this mean going to a clinic or a kur or something? I don't know. I know whatever it is, I can only start when I am back in Germany at the end of Sept. And thank you, I will definitely try to have a nice vacation. I wish you all the best with your upcoming appts!

Pascal,
Yes, send me a PM if you are in the Düsseldorf area! I am really really really going to try to not to to any more neuros. He and you are right - really. I will never be satisfied. I PLAN on going only when my primary care thinks I need to go back. I do not feel good at all, feel actually sick to my stomach, when I realize I took up valuable time from the neuro which could have been used for him to help other seriouslly ill people. He said he has patients like me 5 a day! That's half his day, I would think. Meanwhile, people who are really sick are waiting for appointments...
Thanks for clarifying the Hoffman's sign. It technically says 'Tinel' sign, not the Hoffman's sign, but I realized they are connected. I also appreciate your words about having muscle loss but still having normal strength. I was thinking that, but was not sure. I also believe the neuro would have told me that I should come in for a follow-up at a certain point if he had any doubts.

My leg issue is not herniated disc. The MRI was ok. But both the ortho and neuro said that there is a nerve root irritated somewhere. I hope for some relief from the cortisone.
Xina535
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Re: Opinion from 3rd neuro

Postby German2 on August 10th, 2014, 10:00 am

Dear Xina,

for an appointment at neuro muscle center you just need an assignment from GP. You wait for about 3 montht. Just do it for a second opinion. For the unclear cases Düsseldorf sends over to Bochum Bergmannsheil. That is where I went and will go again overnext monday.
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Re: Opinion from 3rd neuro

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