Back from Neuro - PNP

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Re: Back from Neuro - PNP

Postby German2 on August 18th, 2014, 12:23 pm

Yes, it is a bit hard to believe...for my other neuro sees that atrophy in my hand and I feel my left hand getting weaker. But this happened also a year before...and so it must be something else. In the same way the dents in my hand appear, the dent under my foot is almost gone now (part of foot arche. I had a really ugly looking foot, but now it looks quite normal again) So it is really a crazy thing...But I have pictures for myself to compare...but I don't show them to anyone else because I made the experience that some doctors became even more the impression I am too much monitoring myself...

Yes, I visited today the top expert for MND and maybe not for xyz...., which I might have.. :D

Don't worry too much (I know it is hard and I do not manage myself). Sometimes I was so sure, yes...now I am there. Now it is my final verdict. Up to now, it never was... :D

And it is just in about one week. Time flies... I keep all my fingers crossed for you, too!!

(I have my local neuro visit at 25th of August...) .
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Re: Back from Neuro - PNP

Postby muppetdog on August 18th, 2014, 2:35 pm

German2 - Great news for you :)

Just out of curiosity, why did he think that the prednisone made you worse when you took it?

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Re: Back from Neuro - PNP

Postby Xina535 on August 18th, 2014, 8:24 pm

Sooooooo happy to hear!!!!!!! Very happy for you!

Can I ask....if the doc said he does not see atrophy, then did he explain why the change/thinning of your hands?

Liebe Grüße aus Fort Lauderdale!
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Re: Back from Neuro - PNP

Postby German2 on August 19th, 2014, 12:30 am

muppetdog wrote:German2 - Great news for you :)

Just out of curiosity, why did he think that the prednisone made you worse when you took it?

MD


Dear Muppetdog,

I did not take Prednisolon but a Glucocorticoid. My lokal neuro (who prescribed me that) did not yet comment on it, because, I have apt on 25/8. I myself realized that my situation went worse everyday and in the end I could not wolk anymore due to muscle pain. When I stopped all went back to normal. On Friday I've got my new bloodwork outcome and antibodies went up instead of (neuros expectations) down. So this would fit in the picture....
I don't know what comes next. MND expert said: no conduction blocks, no Multifocal motoric neuropathie, no ivig (immunglobuline). So maybe the strategy of my local neuro, to try on ivig next is blocked now, because MND expert told me, he will report to my health insurance company that there isn't anything to treat...
Last edited by German2 on August 19th, 2014, 12:41 am, edited 1 time in total.
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Re: Back from Neuro - PNP

Postby German2 on August 19th, 2014, 12:40 am

Xina535 wrote:Sooooooo happy to hear!!!!!!! Very happy for you!

Can I ask....if the doc said he does not see atrophy, then did he explain why the change/thinning of your hands?

Liebe Grüße aus Fort Lauderdale!


Dear Xina,

thank you!! My honest opinion? I think he is totally convinced that I don't have MND (and I absolutely think he is right!!), so that a more skinny hand would not fit the picture. But he told me to come back. I think there is the problem which nytviolet already stated: Such a doctor cannot just say "I do not know what it is, but it is not..."....But he knows his job. And in this direction I think he does not make mistakes...

Have Fun!!

German
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Re: Back from Neuro - PNP

Postby German2 on August 26th, 2014, 1:18 am

Hello,

I had my local neuro appt. yesterday...My left muscle between thumb and index finger is now clearly reduced. I have lost power in thumb...But I still have normal reflexes. His dx is autoimmune axone neuropathy. He said I have already one autoimmune desease (thyroid one) so the possibility of having a second one is higher than to have MND. And atrophy would not just happening with MND.

The MND expert did not found any nasty signs one week ago (but no EMG done). I should come back in a half year. And he also denies the dx of my local neuro..

So what strange thing is going on in my body..? This process of muscle reduction already happend to me one year ago in the left hand, but more in palm and thumb power loss..This time it is different....

Cortisone did not work. Next step would be IVIG (autoimmune globuline). But I am going to hospital in two weeks to get a more extensive exam...

The only thing which is positive and keeps me alive is that my twichtes have reduced. Very occasionally ones here and there. But it drives me crazy anyway, as you can imagine. Hell would be a nice place compared to what I am into....But first symptoms happend to me 2 years ago. Got worse, got better, now getting worse again. I had massive swallowing problems a year ago. But actually I have none...I have muscle pain some days, but not every day...changing locations.

Though atrophy in hand muscle don't make me feel very comfortable at all...

My personal hell last now since 2 years....When will that all come to an end?? And hopefully a good one..
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Re: Back from Neuro - PNP

Postby leaflea on August 26th, 2014, 2:59 pm

Dear German2,

What a hellish journey you have had. The good news is, this totally make sense! I believe because of the time and persistence you have put into this, you have a correct diagnosis of autoimmune problem. I didn't know much about it, but now read up on it. It is a difficult diagnosis to make and could be confusing. But, it clearly fits that pattern of sort of waxing and waning - you have had clear symptoms which have come and gone and sometimes mimic MND. I have one friend with SEVEN autoimmune disorders. It is true, if you have one, you are greater risk to have another. This is treatable, especially now that it seems very clear this is what you have. What a relief, still stinks to have a problem but wonderful to know what it is and the treatment for it. I am happy for you! What a mysterious thing our bodies are.

XX
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: Back from Neuro - PNP

Postby German2 on August 28th, 2014, 1:15 am

Dear Leflea,

thank you! you are right. It would make sense...But as long as it is not proven electrophysically, I am scared. Up to now, nothing could be found in the NCV or the reflexes, indicating this. These antibodies indicate in 85-90% an autoimmune pnp and in 5-10% mnd. And cortisone made the muscle decline worse...
I am now waiting on my appointment in hospital hoping to get hopefulla a good outlook for the future...
Ok, time is on my side..first symptoms happend two years ago, twiching 13 and a half month ago and it is almost gone...it is enough to have worsening atrophies...

GErman 2
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Re: Back from Neuro - PNP

Postby German2 on August 30th, 2014, 6:54 am

Dear all,

I tried to stay away from this forum until my appt. in hospital. But meanwhile I am so depressed that I don't know what to do with my time. Every day I try know to train my atrophied muscle between thumb and index finger now, for this worked out one year ago. I managed to retrain my muscles again and atrophy in palm and weakness in thumb vanished. My muscle pain gets stronger and stronger actually but they appear mainly just in the evening, when I am lying in bed...I still get some twiches here and there from time to time, but just once. Not much in general. But my hands look so weird.

What drives me crazy is a phone call of my aunt yesterday. She saw a tv show and told me that they have found a new desease for which they are fundraising actually...And she immediately would have thought of me..".You also did have swallowing problems and muscle decline, right??" GREAT!! That saved my weekend!!

I tried to explain to her that this is exactly my biggest fear, and I explained oll over again and again that this is no new desease but the desease which killed the mother of my aunt's daughter in law a few years ago..- So she might know it.."Oh I have forgotten", she said."But maybe you don't have that." It is not her fault.

But I don't know how to stand the one and a half week until hospital appt., even not to think about the investigations itself. What if they find nothing? What if they find my biggest fear desease....?
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Re: Back from Neuro - PNP

Postby muppetdog on August 30th, 2014, 9:55 am

German2 -

Don't think of any new disease you have heard about right now. We all know there is a lot out there they don't know about and a lot of stuff they are working on. The bottom line is, you had one specialist say you DON'T have any type of MND. You just have to go with the information you have right now! I know it's hard not to think about what could happen in the future, especially reading all the horror stories on the internet. I really have a hard time with this stuff, I don't want my symptoms to get worse and think about it a lot. I always tell myself that I just have to take it a day at a time and work towards getting answers or relief. You can't figure it out all right now.

The night time is the worst for thinking too much, and it is also the time when symptoms are the worst. Lately I have been having burning, itching, sunburn feeling, cold and hot shooting and stinging pains with a lot of muscle aches, buzzing, and general fatigue. It all seems to be worse at night so I just try to get through it. I take a lot of Tylenol and Ibuprofen when these flares happen. I always know they will go way eventually, though. You had times where your body repaired itself, you have to remember that. If it is an autoimmune thing, your atrophy could reverse slowly and your hand could return to normal like the other parts of your body did. Remember that. You could just be going through a long flare. Keep up the good work and don't catastrophize everything right now. YOU WILL GET THROUGH THIS, no matter what it is.

Just try to be at peace until your appointment. Get through the pain and symptoms as best you can. Try to find something to take your mind off of it (this does not mean researching new, crazy, improbable diseases.) Just have a clear head when you have your appointment, take charge with good questions, and keep moving forward trying to find your answers; that is all you can do :)

Good luck

MD
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Re: Back from Neuro - PNP

Postby German2 on August 30th, 2014, 12:34 pm

Dear Muppetdog,

thank you so much for your words...it is very hard for me to stand all this for additionally I have thyroid problems actually. So my mood is very bad anyway, apart from my aunt watching s.th. about the ice-bucket challenge and hearing "first time" from als and thinking of me (though a relative of her died from it). :oops:

I live in fear since two years and now it really get worse and I don't have the power any more to cope with this all. My poor kids they don't have her mother any longer...I am just a wreck. But yes. I have to wait on my stay in hospital...There is nothing else I can do meanwhile...
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Re: Back from Neuro - PNP

Postby Bibi on August 30th, 2014, 1:26 pm

German2 wrote:Dear Muppetdog,

thank you so much for your words...it is very hard for me to stand all this for additionally I have thyroid problems actually. So my mood is very bad anyway, apart from my aunt watching s.th. about the ice-bucket challenge and hearing "first time" from als and thinking of me (though a relative of her died from it). :oops:

I live in fear since two years and now it really get worse and I don't have the power any more to cope with this all. My poor kids they don't have her mother any longer...I am just a wreck. But yes. I have to wait on my stay in hospital...There is nothing else I can do meanwhile...


I understand You so Well , i really , really hope that your stay in The hospital Will finally bring You some very good news, i have only been in this for 4 monts and i also feel that i am on another planet away from my family.
I am thinking off You and hope you wil get some good answers soon !
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Re: Back from Neuro - PNP

Postby German2 on September 3rd, 2014, 3:01 pm

Hello,

today I had an appt. with a rheumatology doc. His dx: fibromyalgia, arthrosis in some areas of my body and "spondylosis deformans" of lubar portion of spine and thoracic spine. Together with my Hashimoto I have a full pocket of little things I do not need...Is this the full explanation of my -meanwhile- bodywide muscle and joint pain? Could be. But the twitches and atrophy might have some other reasons...And what fibro is concerend I am quite sceptical because anti rheumatism meds are helping me, which is never the case in fibro...
So I am curious whether the neurologists in the hospital find some more nice suprises for me and maybe confirme my polyneuropathie which is suspected dx of my neuro....I am so much hoping that my 2 years lasting story will come to some end..
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Re: Back from Neuro - PNP

Postby Bibi on September 3rd, 2014, 3:31 pm

Hej German

I hope That You soon Will get some good answers ! When are You going to The hospital ? I am waiting for EMG , i have not Got an apointment yet , waiting for A letter. The last days i have have pain in my Neck and in The tendon under my left foot which is twitcing All The time . But today i went for A Walk and And A bikerun together with my daugther , i have been " away" too long.. , i must try to go on with my life during this twitcing ..
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Re: Back from Neuro - PNP

Postby Nytviolet on September 3rd, 2014, 9:22 pm

Bibi, that area under the foot (at the arch, but toward the inside) is my WORST hotspot. GERMAN, I did not know you also have spinal issues and fibromyalgia? Im dealing with tge same. Looks like there's a lot more to this BFS than just twitching. If anyone reading this suffers from just fascics, I envy you. Best wishes guys.
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

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