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Back again

PostPosted: November 7th, 2015, 9:04 am
by German2
- please do not read if you are very anxious, thanks -

Hi there,

I did not write for a longer while. Things did not improve but get worse. My left lower arm is like skin and bones now. Right arm on its way there, too. No concrete power loss, but if I do anything with that arm it hurts soo much swimming possible for example. Went to neuro a few weeks ago. He agreed on my atrophies. In my muscle biopsy it is said...slight chronic denervation with reenervation afterwards. So I am curious, what he will tell me on Monday about this outcome. I mailed to the performing pathologist, but I did not receive any answer towards what it is pointing to.

Statement of my neuro: How long can you live with MND finally? I said...about 10 years in a good case. He replied: then you will know in 7 years, if that's whats going on....Very great!! He said that he had 2 clients with suspected ALS who lived for further 20 years. They had a different desease...and now he had one whom he did not expect to have and she is already dead...very reassuring!!

But what can I really exept with a skin and bone lower arm, hurting plexus areas on both sides, stiff and hurting foot ankles...Can I say...time is on my side? After 2 years of minor twitching (I mean twitching is not really my problem, I have it to a low extend but often in the back or front of my body) and very very slow muscle decline, which now took up pace in arms...What can I expect? My next appt in MND ambulance is in mid december..I don't know sometime, how to stand that all....Is there any chance that it is something else than MND?

Re: Back again

PostPosted: November 7th, 2015, 10:02 am
by leroyb
Sorry to hear that German.


That case actually sounds worse than yours German but still not mnd.

If by some chance it turns out you have a type of mnd it still does not sound like classic fast progressing als.

Re: Back again

PostPosted: November 7th, 2015, 11:05 am
by German2
Thank you! I read the story...and it sounds really quite similar. It is my only hope, too, that I have with my immune system..

My symptoms began 3 years ago, my twitching started more then two years ago...My muscles slightly declined during that time but were partly recovered. Then my small fingers fell asleep every night. Then also my ring fingers...then my whole arms. A half year ago, strong pain started in my lower arms, and then, almost overnight, I lost muscles in both lower arms (though it started before to decline), but more in the left one. This is so bony meanwhile that it hurts very much. My muscles are stiff in general and tensed...I had more than one clean EMG in the first 2 years. Then I had one with chronic neurogenic changes. Another performer presented a "normal" EMG afterwards, but the muscle biopsy confirmed the chronic denervation. My problem is that everyone confimrs the atrophy, but no one give me a thorough investigation.

I have the leaky gut, too. I treated it with glutamine, probiotic, prebiotic, dozen of vitamins and stopped eating gluten and dairy, too. I would say, the twitching went much better, but not the atrophy...Ok, I also have a shift in my immune system (but that was not discovered by my immunologist but by a private doctor), have hashimoto and ecrtain autoimmune phenomenons in my past....But isn't ALS some kind of immunological problem, too? Where is the difference to loose muscles due to MND or due to some immunological problem, if they don't offer any cure for me (no diagnosis - no cure) ?
They even don't offer a thorough investigation for me...the statement of my neuro, will know in 7 years the latest is really bothering me :twisted:

Re: Back again - and shocked

PostPosted: November 11th, 2015, 5:31 am
by German2
Today I was checking all my dx on the certificats on disability from the last 2 years...Then I was shocked: One of my former doctors, who obviously wanted to get rid of me as a client, diagnosed me with MND on the certificate, with an "g" which means: saved. He is an internist I haven't visited him longer time now, for mentioned reasons. I will write him now, to ask whether he has informations which I do not have...would be scandalous, if I would have a fixed MND diagnosis since over a year and I DO NOT KNOW. I hope this is just one of the nightmares which come and go....

Re: Back again

PostPosted: December 2nd, 2015, 5:44 am
by German2
If one says time is a great healer...then not for me :-(. My left lower arm is worse now...just skin and bone...It hurts from using it most of the time. Sometime I have a strong pain in ellbow joint, from there I have strong burning pain down to lower arm. My grip is slightly restricted and a lot falls out of my hands now. But compared to the atrophy I would say, it is still releatively ok...
New symptom is burning pain in intercostal area from time to time. I had several cramps in my tongue...not very strong ones but they were there.

Twitching is back and got stronger. It was on a very low level before. It is mainly at the back and intercostal area or close to my neck, above the clavicle. That area also hurt sometime and feels and sounds like cracking if I move my shoulders...Above that my thumb sattle joint on the right side hurt, too since weeks. That occured after a period of thumb feeling pinched off....When sitting for a longer while my joints in legs are very stiff and it takes sometime to get up from a chair. Like an 80 year old....Cold weather makes all worse...pain, stiffness.

As I also have obviously blood circulation problems in my extremeties (cold, raynaud look, wrinkled finger tips) I am hoping it can all derive somehow from plexus brachialis problems...I have the diagnosis Sulcus Ulnar nerve syndrom, but the atrophied muscles are not just the innervated ones by this nerve....

The pain in my arm is hard to bear meanwhile. I so much hope that in the MND ambulance where I am sceduled in two weeks they will help me with some answers, if they exclude again this desease...

If you have any thoughts, please share with me!

Re: Back again

PostPosted: December 2nd, 2015, 10:37 am
by German2
I have forgotten to mention that someone told me that I have a "sick" voice. Then I asked my family and they all agreed that my voice has changed - now I hope it is just from hashimoto (it is possible and I still look for "natural" reasons of each of the symptoms.)...If anyone thinks to be in a nightmare, I am there, too. So you're not alone. But the good thing is in the end, that somehow I got used to it. I take a xanax from time to time, but very seldom.

For example yesterday, as I got an appt. to discuss my muscle biopsy with the performing is in December 2016!! A full year waiting...So I asked the neuropathologist directly on the phone, wheather it could be MND due to it. She said, that this can neither be excluded nor approved, because a biopsy could never do that....And above that she is not allowed to tell me such things on the phone..

Of course I'll pick the final report and bring it with me to the next ALS appt. I hope somehow that my nightmare come to an end somehow at the end of the year. SOMEHOW....

Re: Back again

PostPosted: December 2nd, 2015, 4:18 pm
by Bibi
Hi German

Just want to say that i understand You so Well . I have not postet for a long time as i still fear The Worst , so You are not alone . I have a lot twitching but also cramps in feet everyday. Since june i have feeling off acid reflux , a gurgling Sound in throath , and my tounge Burns . ( The tounge feeling i had since nov 2014 ) i had a gastroscopy in september , which showed a hiatal Hernie and gastritis , i have eaten omeprazole and pantoprazole since august but it dont help. Now i am very worried because i Think theres is some athrophy on The Right side of tounge .my husband Can see it too. I Went to an ENT , he looked in my throath but didnt see sign off acid damage. I Was There for 2 minuts and he didnt look at The tounge , only told me to ask my GP to refer me to hospital for further evaluation if she thinks that is needed. Talked to another GP today ( Phone), he thinks that is from anxiety , but he Said he couldnt decide if The tounge Was athrofied . Now i have an appointment with a private neurolog 14/12 , i must pay myselves and hope that he at least Can tell me if i have athrophy or not. I have dystoni in my Right hand ( confirmed by neuro ) back in 2012 a there is some athrophy in littlefinger side of that hand. This is confirmed by a neuro in october this year. I also have hyperreflexia ( i saw it in my papers ) but she told me that it is not A.. , but i could see a A.. Specialist in june 2016 ! But as i Said , i am going to see a private neurog soon.

Re: Back again

PostPosted: December 3rd, 2015, 2:14 am
by German2
oh Bibi,

So sorry to hear that all, what you have to go through. I... But on the other hand it is comforting to be not alone. I think the big task in those times to get another perspective on life in general...I started with a deep depression/anxiety complex, as the first doctor told me it could be ALS in early stage two and a half years ago...and I ended up with prescription of strong psycho drugs. But with that my personality was completely gone. So I started to figth to get rid of it all..I am almost there...;-) It was very very hard...but I worked a lot with Supplementation (esp. Vit D and Omega3, B-Komplex) which are the so more efficiant antidepressants that I am know in a mood to cope with that all better than before. I spent in alternative medicine and ostheopathie...and it partly worked for me. Actually I got all my root filling teeth out of my mouth because there were hidden inflammations (the teeth hurt since it seems to have been a long process). This is for the part of my mood. What my body is concerned I do not know if I can get the "turnaround" but I try to concentrate on every possible solution to get better...That works for me. But the pain in my lower arms, get stronger and stronger, though. Which means I am restricted. I can not put pressure on my ellbows..Do you have any other restricitions or is it "just" the tongue...? I wish you good look with the private neuro. Keep me posted...

Re: Back again

PostPosted: December 7th, 2015, 11:59 am
by German2
My physical condition has reached the next level of bothering me...stabbing pain in my leg and my foot, like cut with a knive, burning ellbo pain and pain at my ribs, front and back, partly burning pain. This started a few weeks ago and today I realized that even touching my ribs is painfull (mainly at sides of my body), lymph nods and lungs are somehow involved (again), and my whole bowel system hurts. From colon end up to throat and esp. when pressing my abdomen. I am totally noise sensitive and I cannot see very good. Spreading nerve pain throughout my whole body...
...So I have to wait, what the experts will say.....But as I know the situation they won't find anything in me.