Back from Neuro - PNP

[German2]

Hi there,

because of my nerve pain I went to neuro yesterday. He already has found antibodies against my nerve system. In a table I saw that they can be found with Guillan-Barre Syndrom, MND and MS. So my anxiety level is high as hell. My neuro said, I have a PNP due to GBS, though it is more a chronic version (his dx is due to symptoms). He is sure, it is no MND. And he says my desease is on the scale inbetween BFS and MND. And it can be cured. He also think I have atrophie on hand (in a place where I cannot see one). The nerve pain and numbness kills me..I don't know exactly how to move on. He started with light cortison several weeks ago and will check the antibodies in five weeks again. I just try to calm down myself that my symptoms are not fitting to MND. And that it all started several years ago and no weakness yet. Though it is not BFS hope that I still have a future...Please keep your fingers crossed for me that all comes to a good end. It feels horrible...

[Yuliasir]

keeping mine crossed, German

[Nytviolet]

That is not bad news!!! Actor Andy Griffith had Gillsin Barre and fully recovered and returned to acting (this was 30 yrs ago). Your neuro has said "def not MND"... What blessing. I don't know I'd you take anything for anxiety, but you may wish to ask for an Rx, because the pain of physical symptoms will make stress MUCH worse, which in turn aggravates symptoms. There's NO REASON you shouldn't make 100% recovery. I will pray for you --you should ask Him for peace and comfort as you get through this. This will pass...promise.

[German2]

Dear Nytviolet,

Thank you for your words..I am not completely sure about this diagnosis, because I have a chronic syndrom, lasting for years. I have heard from my hashimoto doc that hashimoto is sometimes accompanied by kind of GBS forms. And for my peace of mind I need a electophysical proof of this dx. So I asked for a place in hospital. The asked my for my reports and now I have to wait. But hopefully there is a treatment..

[German2]

Hi there

I just want to give you an update about my "special case". I took Cortisone for 4 weeks (against antibodies against nerve system). The effect was that it went worse day by day...In the end I had to go to emergency department of hospital. Every muscle in my body hurt..I could not walk any more. I had a very intense neuro exam there. Everything normal apart from one hyperreflex in my right biceps. The neuro asked me if I had a herniated disc in throat spine...and yes. I have...And apart from a slight restricted nerve conduction in both of my legs (which I have been told before). But no other odd signs.
I have to admit that my local neuro sees atrophy, but he said "no hair of my head thinks this could be MND". But ok. Cortisone seems not to be helping...Now I stopped it and today I had a 4 km walk again! So I tried not to be too worried. If it went worse and then it went much better again, that is a good sign to me!
Anyway, I have now an appointment in hosptial in the neuro department to make more diagnostics...That is quite a long time to wait, until the 9th of September. But I try to be positive. Symptoms still wax and wane. Went bad and then better...After now one year of twichting. So in my case it seems to be true, that, even if it's not bfs, it does not mean it has to be mnd though...

[Bibi]

Hi there

I just want to give you an update about my "special case". I took Cortisone for 4 weeks (against antibodies against nerve system). The effect was that it went worse day by day...In the end I had to go to emergency department of hospital. Every muscle in my body hurt..I could not walk any more. I had a very intense neuro exam there. Everything normal apart from one hyperreflex in my right biceps. The neuro asked me if I had a herniated disc in throat spine...and yes. I have...And apart from a slight restricted nerve conduction in both of my legs (which I have been told before). But no other odd signs.
I have to admit that my local neuro sees atrophy, but he said "no hair of my head thinks this could be MND". But ok. Cortisone seems not to be helping...Now I stopped it and today I had a 4 km walk again! So I tried not to be too worried. If it went worse and then it went much better again, that is a good sign to me!
Anyway, I have now an appointment in hosptial in the neuro department to make more diagnostics...That is quite a long time to wait, until the 9th of September. But I try to be positive. Symptoms still wax and wane. Went bad and then better...After now one year of twichting. So in my case it seems to be true, that, even if it's not bfs, it does not mean it has to be mnd though...

Hej German
I am so glad too hear from You , i am still very new into this ( near 3 months )and i dont write so much because of my poor english ( i am Danish ) but i have Read your story and i am glad too hear that you are A little better again.
Bibi

[German2]

Hi Bibi,

thanks for your words...yes, actually I am ok again. My last year was so scary, and then, heading the one year mark, I was so sure that I am getting out of the story. After having my hashimoto diagnosis. But there seems to be always a small devil on my shoulder telling me: You're not. I have some new present for your...I took cortisone and my doctor was telling me, after that you'll get better. And at the end of this medication, I could not walk any more..And I thought, ok. That is the end of the story. And now, 4 days off the medication, I feel pretty fine again. I feel I could have a run with no problem. So It is defenitely not the end of my story My problem is, that I react paradoxly on most of the medication. The ones that should not help (Rheumatism meds), help. And the ones intended to help (cortisone), do not. In my bad period, the als specialist I already went to and who ruled out mnd, gave me a new appointment. And I have an appointment in hospital. But now I now, it was just the wrong medication. But of course I will have it all rechecked again.
Bibi what is your experience up to now? Did you have some further diagnostics?

[Bibi]

Hi German
Thanks for asking me !
I have only seen one neuro Who made A clinical that was fine , but it was only 2 weeks into this .i have been seeing my Gp ,
And she thinks that it is All anxiety and put me on MIRTAZAPINE for sleeping , only 15 mg , and it really helped me sleep better. BUT i still have Lots of fascikulations , Many i my feet and leg and some in my arms, back , face......My Right leg feels " Heavy" and stiff everytime i start to Walk , but after walking A While it gets better , i dont understand this. The last 2 years , before start fascikulations , i have had A " frozen shoulder " i had A lot of pain in my arm and could not lift it , because of The shoulder. I have Got injektions in my shoulder with steroids and it helped for The pain , but not for The movement. It is known that only time Will make this condition better, and it is much better now.after my shoulder problems i had pain i my back in The same side (Right) , and in my hip. But now i have " only" fascikulations , A little pain in my left arm and my Right leg muscle above my knee contracts and feel stiff When i start to Walk. And A new thing , that makes me so scared , for last two Nights ,my jaw jerks When i am going to Fall asleep. This Night i wasnt sleeping undtil 6 in The morning because i am so afraid that these jerks are A symptom of You know what. I am going to see A neuro 28/8 but i dont know How to go on with this fear until Then, I try not to Think of it and be there for my family , but i feel so scared and depressed. I feel that i have i bigger Risk , due to my age ( 55) and my bloodtests has until now not shown anything , except for A litte low D . Bibi

[German2]

Dear Bibi,

I never heard of jaw yerks in context of mnd..And obviously your pain symptoms even got better..It is good that you have something for sleeping. I take the same, double dose..I know how it feels, if you feel anxiety the whole day. Our chances to get s.th. nasty are the same. Statistic is not so important. It is always an individual fate. You have the same chance to have bfs like any other here (forget about me, I seems to have s.th. else obviously ...My next neuro appointment is also 25th of August. Hospital 9th of September...It is always a long run. But I know time goes by...it really does. I am into symptoms since almost 2 years (when it all started they also had some nasty potential diagnosis for me - which not became true), and into twitching 12 month (some other nasty potential things popped up). No quality time. Really not. Symptoms came and go. But after all I am hoping that after a while the nasty things are outdated. Time will fly, believe me...it is just a few days until your neur appt. I keep my fingers crossed for you, also!

[Bibi]

Dear Bibi,

I never heard of jaw yerks in context of mnd..And obviously your pain symptoms even got better..It is good that you have something for sleeping. I take the same, double dose..I know how it feels, if you feel anxiety the whole day. Our chances to get s.th. nasty are the same. Statistic is not so important. It is always an individual fate. You have the same chance to have bfs like any other here (forget about me, I seems to have s.th. else obviously ...My next neuro appointment is also 25th of August. Hospital 9th of September...It is always a long run. But I know time goes by...it really does. I am into symptoms since almost 2 years (when it all started they also had some nasty potential diagnosis for me - which not became true), and into twitching 12 month (some other nasty potential things popped up). No quality time. Really not. Symptoms came and go. But after all I am hoping that after a while the nasty things are outdated. Time will fly, believe me...it is just a few days until your neur appt. I keep my fingers crossed for you, also!

Thanks again , and i Will Think off You 25/8 ! I Think it is very hard to live with this fear , every Day i must tell my self , that my life is NOW wether i am seriosly ill or not , i feel Best When i Walk in The Nature, then i feel alive , but as soon i am back in my house i feel scared and Sorry , and i have A live on " stand by". i hope for You that you soon Will have A lot of quality time and All nasty things far away.
Bibi

[German2]

Dear all,

Now I marked my one year, though I am not very optimistic and don't feel very well. Muscle pain come and go with different locations, strange sensible feelings, some twitches, but not very often any longer - this got better.
But o.k. I definitely don't have BFS. So this mark might not so much apply to me...I have antibodies against my nerve system and probably have polyneuropathy (Though I do not now how often those ganglioside antibodies are tested anyway. All other neuros before did not even think about this option).

I saw my neuro surgeon today. He looked at my antibodies of my nerve system and is also quite sure, it is an autoimmune Polyneuropathie in combination with my hashimoto which I also do have...Those antibodies also appear with MND, but he is also sure - same as my neuro - this has a totally different development.

So maybe you can take me as an example that even not having BFS and twitches and slight atrophy does not automatically means MND (that is what I hope!!).

On the 18th of August I see the MND expert again (he asked me to come again, after I wrote him about the antibodies, but he stretches, he doesn't want to see me in the MND ambulance but in his regular office hour. He wrote certain essays about those antibodies and might be interested in the case - that is my idea).
I have an appointment in neuro hospital for a check-in on the 9th of September but my neuro and neuro surgeon are of the opionion that this is not the right way. And it would better to have a muscle and nerve biopsy in the end, after trying some medication and see how it helps. All testings would just show up that something is wrong but not the reason. This university hospital here is regarded a bit critical in diagnostics, too (Mayo Clinic is a bit too far away ) So I am not yet sure, what I do...I know my neuro is a very good one. The only one with a clear idea up to now...

My only positive outlook is, that the shrinked muscle under my foot seems to grow again a bit...That is what I think (up to know I just realized decline..). The same happened to my palm muscles one year ago. So there seems to be a process which is slightly reversible...And no weakness yet. Strong hands (I traine the quite often), though slight atrophy..Walking on heels and tiptoes no problem...Strenght testing perfectly.

I can just summarize, that the last year I went through a special hell. Twichtes, atrophy...I was in a very dark place...And still I do not see the light..My mood is depressed. I almost get used to and must admit that I am just arranging with the situation that life just lost most of its qualitiy...
But I don't give up at all...
So if you feel like, keep your fingers crossed for me (and my kids and familiy) that everything turnes out in something treatable...

German

[Bibi]

Dear all,

Now I marked my one year, though I am not very optimistic and don't feel very well. Muscle pain come and go with different locations, strange sensible feelings, some twitches, but not very often any longer - this got better.
But o.k. I definitely don't have BFS. So this mark might not so much apply to me...I have antibodies against my nerve system and probably have polyneuropathy (Though I do not now how often those ganglioside antibodies are tested anyway. All other neuros before did not even think about this option).

I saw my neuro surgeon today. He looked at my antibodies of my nerve system and is also quite sure, it is an autoimmune Polyneuropathie in combination with my hashimoto which I also do have...Those antibodies also appear with MND, but he is also sure - same as my neuro - this has a totally different development.

So maybe you can take me as an example that even not having BFS and twitches and slight atrophy does not automatically means MND (that is what I hope!!).

On the 18th of August I see the MND expert again (he asked me to come again, after I wrote him about the antibodies, but he stretches, he doesn't want to see me in the MND ambulance but in his regular office hour. He wrote certain essays about those antibodies and might be interested in the case - that is my idea).
I have an appointment in neuro hospital for a check-in on the 9th of September but my neuro and neuro surgeon are of the opionion that this is not the right way. And it would better to have a muscle and nerve biopsy in the end, after trying some medication and see how it helps. All testings would just show up that something is wrong but not the reason. This university hospital here is regarded a bit critical in diagnostics, too (Mayo Clinic is a bit too far away ) So I am not yet sure, what I do...I know my neuro is a very good one. The only one with a clear idea up to now...

My only positive outlook is, that the shrinked muscle under my foot seems to grow again a bit...That is what I think (up to know I just realized decline..). The same happened to my palm muscles one year ago. So there seems to be a process which is slightly reversible...And no weakness yet. Strong hands (I traine the quite often), though slight atrophy..Walking on heels and tiptoes no problem...Strenght testing perfectly.

I can just summarize, that the last year I went through a special hell. Twichtes, atrophy...I was in a very dark place...And still I do not see the light..My mood is depressed. I almost get used to and must admit that I am just arranging with the situation that life just lost most of its qualitiy...
But I don't give up at all...
So if you feel like, keep your fingers crossed for me (and my kids and familiy) that everything turnes out in something treatable...

German

I wish The Best for You and keep my fingers crossed! And hope that You will write here again after your neuro visit
Bibi

[Xina535]

I also wish you the best!!!! Please tell us how you are doing and how your appointment goes!

PS: I thought antibodies are auto-immune related and did not indicate MND. Am I now hearing that if you have MND, that your blood test will show certain anti-bodies ?!

[German2]

Hi!

In 90% of the cases if there are certain antibodies against ganglioside, it is autoimmune. In 5 up to 15% they also appear with MND, but they are not regarded as a relevant criteria.
But my situation gets worse..During the last days I lost a lot of muscle and power in both of my hands. My GP looked at them and told me he firstly thought of als...
You can imagine how I feel today...

Ok, this also can happen with the motor neuron forms of PNP. Especially because it is on both sides quite symmetrical. I stop for now training of my hands because I think it is not good at the moment. And maybe was too much anyway.

But I am somehow shocked and try to prepare for the worst. But that does not get much easier after 2 years of suffering and anxiety....

Any thoughts of someone that might help me in my darkest hours?

German

[christo]

Hi,

I am sorry to read you are feeling bad at the moment. Since your neuro told you he believes it is NOT mnd, then you must trust him. You seem to fit the autoimmune polyneuropathy profile perfectly. This condition is not fun but afaik it's manageable. Take care !