Back from Neuro - PNP

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Re: Back from Neuro - PNP

Postby German2 on August 8th, 2014, 4:27 am

Dear Christo,

thank you for your supporting words. Yes, you are right. It is fitting perfectly...my motoric nervers are affected, my sensible nerves and my vegatative also (minder perfusion of blood, vasospasm due to vegetative nerves in the vessels, and one day also brain nerves - I could not speak for hours). My neuro told me this could have been a vasospasm in brain. But this happened just once, one year ago.. So this story is not nice anyway. All my symptoms came and go and were partly reversible. And in addition I am autoimmune anyway (hashimoto). These facts I tell myself everyday to calm me down a bit. Nevertheless it is scary ...
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Re: Back from Neuro - PNP

Postby German2 on August 8th, 2014, 2:10 pm

...almost everything is fitting to PNP. My reflexes are still normal...This is not fitting. Just vibration test showed slight restriction in legs. But actually I am developing a quite similar atrophy of hands like one year before. This is so crazy...
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Re: Back from Neuro - PNP

Postby muppetdog on August 9th, 2014, 11:15 am

German -

You said you were diagnosed with Guillain-Barré syndrome (GBS). Did your doctor talk to you about Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)? It is like the chronic version of GBS. Has he talked to you about treatments such as IVIG? Did you have a normal EMG? CIDP seems to be in one of the realms of "not that much is known."

You might want to post about what is going on with you on this board.

http://neurotalk.psychcentral.com/forum20.html

There are some knowledgeable people on there that have CIDP and GBS.

Here are a couple other sites I have found. This might not be what you have, but you can read through them and discuss them with your doctors. It never hurts to have a little knowledge on your side and some questions going into these appointments.

http://www.ninds.nih.gov/disorders/cidp/cidp.htm
http://www.gbs-cidp.org/home/cidp/cidp/
http://www.phoenixneurology.com/specialties/cidp.php
http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/peripheral_nerve/conditions/guillain_barre_and_cidp.html

I really wish you the best and am routing for you :)

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Re: Back from Neuro - PNP

Postby German2 on August 9th, 2014, 11:50 am

Dear Muppetdog,

thank you for your response and the links. No I do not have a final diagnosis up to know. This is just an assumption of my neuro. And he first tried to help me with a low dose of cortisone. But it made it worse...He did not talk to me about the variations and did not make any electrophysic up to now.
That is why I have an appointment in a neuro muscle center to get a second opinion.
My neuro told me that his approach is to test whether steroid brings the antibodies down. If not he will try on a immunsupressiva....And in the end he will do the testing. I think he is afraid of frightening me with the outcomes and he first will present me some treatable dignosis...I don't know whether this is the right way.

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Re: Back from Neuro - PNP

Postby muppetdog on August 9th, 2014, 4:16 pm

No problem :)

I have done a lot of research on this because my neurologist thinks I have some sort of variant of it. I was diagnosed with Small Fiber Neuropathy (SFN) via epidermal nerve fiber density test (ENFD) a month or two ago and my Dr thinks this is all due to some sort of autoimmune related dysfunction. I never did test positive for any anti-ganglioside antibodies like you did, though. I guess CIDP is really hard to diagnose but can get worse if you don't treat it.

Good luck. I really hope you get some clarity from your next neuro visits. Feel free to PM me if you want to compare notes, I have had just about all the tests that can be taken and usually make it a point to research why they are taken :)

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Re: Back from Neuro - PNP

Postby German2 on August 12th, 2014, 9:54 am

Hi there,

this is again a very black day...Today I went to my Hand-Ergo-Therapist who treated my one year ago already for a longer time. She told me that - with my presence of Atrophy on hands and arms, it is obvious that I have a neuromuscle desease. She compared me with a potantial MND patient she also treates since two years (now it turned out to be s.th. else than MND for him) and said, my situation is much worse. Otherwise my situation would be not that different from a year ago and so she does not expect me to have MND. Then I would not sit there as I do any longer...does that sound promising? :oops:

I tried to aks her why I then gained so much power in my hands due to training and she answered that I compensate with other muscles. And that for the training, it is not much muscle there (but the power is there....how can that be??)

Now I am on Xanax. And I am quite released that my kids are not here today. She recommended me to try on a gluten-free diet to reduce potential inflammation (I am autoimmune and my hope is that my neuromuscle desease is a treatable one). I still do not have a concrete diagnosis. Actually the expect me to have some kind of imflammatory PNP. But Korticosteroide seems to mak everything worse... And for me it seems to be a long way.

MND was ruled out more than once (but I had just one EMG a year ago, I am too afraid to do a new one. I am sure, it turnes out to be bad, if there is atrophy), but I have a new appointment with MND specialist next monday...

I hope that I don't need a full package of Xanax after that. All I can do is just pray!

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Re: Back from Neuro - PNP

Postby muppetdog on August 12th, 2014, 4:59 pm

Take a Xanax. Chill out. You don't have all the facts yet so don't expect the worst. I am not sure what a Ergo-Therapist is but it does not sound like she is a neuro-muscular neurologist so don't read too much into it. Go to your upcoming appointments and see what the actual neurologists have to say. YOU WILL GET THROUGH THIS :)

Sending good thoughts your way.

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Re: Back from Neuro - PNP

Postby German2 on August 13th, 2014, 3:02 am

No she is not, but she can feel my muscle structure with her hands and knows me from last year. But it is really true, I can watch my muscles shrinking in both hands and arms during the last few weeks. My opinion: Cortison was the wrong therapy for me and made it worse. That is what I hope. And this could be an important differential diagnostic.
Of course, it is a horror trip.
And I stay on Xanax until Monday.
Things which are in my side:

-I do not have any weakness yet.
-My development is quite symmetrical yet. Left hand a bit worse, and right arm a bit more then left arm.
-My left foot which had a very deep foot calf has got better. Muscle has come back partly. It almost look normal again
- I had a weak left hand with shrinking palm area last year which recovered. Power came back.But this area is not involved that time.
-This would be typical for Ganglioside Antibodies which are flouide and are wandering throughout the body.
-My development started two years ago with involvement of my autonomous nerve system (vessels)
and then went to sensitive problems
-These two nerve systems are normaly not involved in MND
-I had strange symptomes came and go like massive swallowing problems so strong that I could not drink for some time. That problem completely recoverd.
-I had massive perceied weakness a year ago, which completely recovered.
- Gangliosides are in 90% associated with PNP (though PNP mostly started in legs)
- I am autoimmune anyway and that indicates it could also be an inflammatroy proceess
-my twitching has got much better. Just some random twitching in places overall body. But not more then 4-5 times a day (that is what I feel). Even my hotspot (right foot) has almost recovered. And there is no muscle decline anyway

I am fitting in no pattern. In any case I have a very atypical development.

After my appointment with MND specialist I try to get a bed in hospital immediately unless he told me that I have the nasty one...
Now I just can try to develope a different perspective on life. It might be limited but I should live...I am at the very beginning with babysteps.
I experienced a similar perspective when I was a six year old child and had an open cranio cerebral injury. And I was the first case here in Germany, on which they try to do an operation. Thank good successfully.
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Re: Back from Neuro - PNP

Postby Xina535 on August 13th, 2014, 5:33 am

Agree -she is ergo therapist, please only listen to those who have the real machines to test your nerve conduction and muscle waves, under the skin, what she cannot see. My osteopath and physiotherpists both had different ideas what was going on with me. I really HATE that she said that to you. THAT is not fair and I would be so PI**ED OFF! I am sorry that happened, but can totally understand how that made you feel.

Some key points for hope from me, from what I learned, and what I think you also learned as well:

-I do not have any weakness yet. - GOOD! You would totally have had weakness by now, based on how *** normally runs its course, remember it is progressive, no good days or bad, and strikes fast! *** patients are in wheelchairs within a couple months.
-My development is quite symmetrical yet. Left hand a bit worse, and right arm a bit more then left arm.
-My left foot which had a very deep foot calf has got better. Muscle has come back partly. It almost look normal again -
- I had a weak left hand with shrinking palm area last year which recovered. Power came back.But this area is not involved that time.

For the above two:
Muscle and power does NOT come back in ***!!!!! And this is why it shocks me to hear that from your ergo therapist, if she knew you recovered :!: :?:

-This would be typical for Ganglioside Antibodies which are flouide and are wandering throughout the body. - There could be so many other things that we never even heard of that this could be!
-My development started two years ago with involvement of my autonomous nerve system (vessels) and then went to sensitive problems Again, could be so many things, but this is not the typical development of ***
-These two nerve systems are normaly not involved in MND
-I had strange symptomes came and go like massive swallowing problems so strong that I could not drink for some time. That problem completely recoverd.
Nothing recovers in ***!


-I had massive perceied weakness a year ago, which completely recovered.Nothing recovers in ***!


- Gangliosides are in 90% associated with PNP (though PNP mostly started in legs)
- I am autoimmune anyway and that indicates it could also be an inflammatroy proceess - Yes, more likely something like that since *** really does NOT fit the above recovery you've made

-my twitching has got much better. Just some random twitching in places overall body. But not more then 4-5 times a day (that is what I feel). Even my hotspot (right foot) has almost recovered. And there is no muscle decline anyway

I am fitting in no pattern. In any case I have a very atypical development.

After my appointment with MND specialist I try to get a bed in hospital immediately unless he told me that I have the nasty one...
Now I just can try to develope a different perspective on life. It might be limited but I should live...I am at the very beginning with babysteps.
I experienced a similar perspective when I was a six year old child and had an open cranio cerebral injury. And I was the first case here in Germany, on which they try to do an operation. Thank good successfully.

Yes, please wait to see what the specialist says. You can'T do anything until then, but live. Do your best to enjoy everything around you which will hopefully make you feel a little more relaxed. Please let us know what happens. Thinking of you! <3<3
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Re: Back from Neuro - PNP

Postby German2 on August 13th, 2014, 7:36 am

Dear Xina,

thank you so much for your supporting words. As a matter of fact, it is the second therapist telling me the same thing. The first one told me: No matter what the doctors tell you now. You can be sure you end up with MS or ALS. And this can take years to find out. He told me that with 2 kids waiting on me behind the door to bring them home safety.

And he opened his comments by saying: Are you the women telling me that she maybe could see the light at the end of the tunnel, or is it just the train, running into me?...And than he said that horror statement. (I brought my children home safety though. But with inner autopilot.)

Yes and my GP looked at my hands last week and told me that he thinks of als when he sees my hands. ...

My Ergo-Therapist compared me with another patient she treats since two years (I know him from a forum and know his Blogg with horrible pictures of muscle decline). His first diagnosis was als, then PNP and now a sub form of MS. Her ERgo-Colleague hast told me that he is an a very bad condition. And now my actual therapist told me: Compared to him you are in a much more bad condition (that sounds very motivating! Really!! - Maybey they are all paid by Pharmaindustry to boost my Xanax consume :twisted: )

This was a climax of statements.

With this "perfect support" of frankly speaking therapists, GPS and whatsoever I am starting now to prepare me for the worst. It is like a step-by-step desensiblilazation. :evil:

My left arm starts to feel a bit strange today....like last year. And then I see myself again in hospital a year ago. No ability to move propperly, no ability to hold a book with my left hand, no ability to drink propperly and a feeling that my last hour is not far. And now I am still here....

Let's wait an see what comes next...

Take care, German
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Re: Back from Neuro - PNP

Postby Xina535 on August 13th, 2014, 12:35 pm

This is just unbelieveable how they are treating you :(
For one to say it takes years to diagnose ALS? Then she is not talking about the usual cases, in my opinion. How can someone be diagnosed with ALS, then it switches to PNP and then now MS!? That is beyond me. Who are these people? Anyone else with opinons on this?
I'm sorry. I wish much better treatment for you. *hugs*
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Re: Back from Neuro - PNP

Postby German2 on August 13th, 2014, 12:43 pm

Dear Xina,

yes it is crazy but that guy visited almost the same stations as I did. He lives closeby and that is a coincidende. And yes, he visited a lot of experts (quite the same as I did) and gathered so many diagnosis. What he has must be very rare...
I am not thinking further than Monday - hoping that I don't go home with a "maybe diagnosis". The overnext step is to go to hospital. My left hand is so skinny now and gets shaky...It is so scary...
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Re: Back from Neuro - PNP

Postby Nytviolet on August 16th, 2014, 9:29 pm

It certainly doesn't fit the als mold...why can't doctors just say "we don't know" then admit you to a first-rate neuro-muscular clinic and run all the tests necessary? It makes me angry that you and your family are being subjected to this. By the time you're finally diagnosed with MS/PNP/MND, we will probably have a cure. I continue to keep you in my thoughts and prayers. Hugs
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
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Re: Back from Neuro - PNP

Postby German2 on August 18th, 2014, 9:24 am

Dear all,

today I had my check-up with MND specialist. And I will give you a short summary of what he said .

status quo: neurological symptoms since 2 years, fasciculations since 13 month (but much better now. Maybe due to the treatment of hashimoto which is a typical reason for fasciculations. You find that in the stickies somewhere..)

Outcome first: He still does not see any MND nor PNP signs. He sees no changes to four month ago..
My hands, where a lot people has seen atrophy (my local neuro, my physician, my ergo, my GP and myself, and even one of his assistant doctors) he cannot see any atrophy.
He made strenth testing - ok.
I had to walk on toes and that stuff. - ok.
He looked at my tongue - o.k
NCV of arms, hands, legs - all perfect and no signs of conduction block, which would be typical for some kinds of PNP.
I had a sonographie of my hand- and arm muscles where atrophy was suspected. It was symmetrical, no changes of structure, no fasciculations.
Though I had the impression that this examination was not that perfect, he summarized that the overall outcome does not indicate any kind of neuro muscle desease.
He said this cannot just said by outcome of exams. This is just by his experience because he sees dozens of als patients every day. And he just knows it by observing me.

In the end he told me to come back in 6 month or a year to follow up (ok...?? why....? *beep*. I did not ask.

To my muscle pain he said that this does neither appear in MND nor in MMN (wich is a motor neuron Polyneuropathy), except some cases but they would have pain due to other reasons. His general impression is still "somatic disorder", my antibodies against my nerve system would be very unspecific (this seems to be a very controversial issue among the different hospitals) and of course he cannot exclude that I have some genetic muscle desease but this would not harm me in any way due to my age...

What should I say? I am relieved of course...And after 13 month of twiching and no obvious MND signs...should I be out of the story...But why come back?
So many neuros, so many opinions. Todays outcome: no PNP, no MND.

But as he is one of about 3 leading experts for MND in Germany, I feel on the save side regarding this issue....

German2 (female by the way...)
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Re: Back from Neuro - PNP

Postby Bibi on August 18th, 2014, 11:20 am

Hi german2
Oh it is good news ! I hope You Can relaxe now , it is so good he couldnt see any atrophy and he is A top specialist !
I know it is hard to " forget" All The symptomes and the fear , i Would react just The same Way, but i really hope that You Can see The light !
I am still very scared and Think i have atrophy in my Right hand, i have always had skinny hands but now They are more skinny. I have A very tight feeling in my Right leg , it feels Strange When i Walk . I really fear my neuro visit 28/8.
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Re: Back from Neuro - PNP

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