Big holes in the back

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Re: Big holes in the back

Postby Yuliasir on December 16th, 2015, 11:31 am

EMDR is a good technique, I know it. Hope it would help.
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Re: Big holes in the back

Postby Bibi on December 16th, 2015, 2:18 pm

Hi German
So good to see ! I saw a neuro in this week too , i have brisk reflexes , but he dont see Als he says . He Said he could send me for EMG but that he dont Think that it Would reassure me in The long time , so he dont Think i should have one. He also Said that he thinks liaison psyciatri Would be good for me. It is for People that have some symptoms that cant be explained . Maybe You have similar in Deutschland ? Do You yulia know that kind of therapi ?
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Re: Big holes in the back

Postby German2 on December 16th, 2015, 3:55 pm

Hi all!

I am so happy to have found this forum here. It is so comfortable to have your comments. Well, my body had really a "burn out" the last years. In the end I was hardly able to climb the stairs alone. Sometimes my husband had to push me to the first floor. When I fell onto the ground, I was not able to get up again. I remember that this all started with my two pregnancies. I was not able to walk alone in the end until delivery...There was something going on in me, exhausting. I tried to compensate my deficits with supplements and muscle training since a half year. No matter how tired I was. I tried to train my body somehow and have taken supplements. That was my survival strategy until today..(that did not work by the way for my arms. No chance to rebuilt the muscle...that is still so). But today, after my appt. I was able to carry not just myself upstairs but also my daughter in my arms....That was the moment where I realized, I am starting to get better. There must be the power to do this....That was my greatest success of the day!!

(I don't want to tell you by the way, that It is important to take supplements or s.th. like that. I do have hashimoto and HPU and therefore I have some deficits to cope with...)
Last edited by German2 on December 16th, 2015, 4:13 pm, edited 2 times in total.
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Re: Big holes in the back

Postby leroyb on December 16th, 2015, 3:56 pm

Great news German :)
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Re: Big holes in the back

Postby misterjuanperalta on December 16th, 2015, 5:14 pm

To elaborate on Yuliasar's response:

According to ALSTDI, muscle ultrasonography (NMUS) is being utilized to identify fasciculations in at least four muscles, and increased fibrosis (muscle echogenicity) in two muscles. Ultrasonography differentiated between MND and mimics with 96% sensitivity and 84% specificity. In the 27 MND patients, ultrasonography detected 15 regions with lower motor neuron involvement that were negative using either clinical examination or needle EMG.

Source: http://www.sciencedirect.com/science/ar ... 5711010959
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Re: Big holes in the back

Postby German2 on December 16th, 2015, 5:37 pm

Dear Mrjuanperalta,
thank you for the facts. ...that is an interesting survey! So maybe this method is a good screening tool to save them time and energy instead of making an emg


I would really like to make you believe that the appearance of my fingers and arms have completely changed. It is really not just in my brain. If I google "atrophy arms" the pictures really show what my arms look like today...no comparison to what they have looked before...really!! And every wheight hurt me very much...but if that is no ALS,ok....I am happy with that. Even my sceptical husband sees this process. It is really scary..I feel ashemed to show my arms today..the first people recognize ist my "spider fingers.." but it is obviously no ALS...
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Re: Big holes in the back

Postby German2 on December 29th, 2015, 2:12 pm

I woke up without beeing able to raise my arm for a while.....Today I received the written exclusision of ALS. They wrote...reflexes all normal. But indeed they did not even test it. My husband is gone for his family does no longer believe that I have a desease and I would be "stupid" as my father-in-law told me. I am alone with my kids...don't know what I can do...

I took cortisone for three days..high dosage..for a flare up of my lung problems and this makes me feel much better than before in general. But this sudden overnight-weakness is frightening me...there are the wholes on my shoulders...
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Re: Big holes in the back

Postby German2 on January 4th, 2016, 4:06 pm

Now I face the situation that my marriage is broken into peaces.....really. I sit here with my two kids...my body situation is not better. My youngest daughter had a foot accident and I have to carry her everywhere (she is heading 7). This is a horrible situation. I have to find me a new place to live for I can't afford the actual one. I had a very hard and offensive struggle with my father in law and then we both broke up for my husband is not clearly on my side....

So whatever it is...not bfs...but something else...has ruined my life completely. I know I am not the only one....it is a very sad "career"....Though I have to admit that my marriage was not good even before..So maybe it is all just a symptom of it.
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Re: Big holes in the back

Postby Yuliasir on January 6th, 2016, 5:38 am

German
it is very sad to read that right now your situation looks so bad.
but if oyu can hold your 7 years daughter, this is not ALS definitely. You got fat atrophy which is very common. You were cleared three times from ALS specialists. You had a hisotry of nervous breakdowns before. I do not think you are 'stupid' as your father in law said. You are suffering but not from ALS or even BFS, but from most possibly some kind of obsessive mood disease wiich is not a separate disorder but a part of complex condition including pains, immune issues (including probably your ANA tests results), panick attacks, connective tissue diseases and mood disorders. I wrote a message about that here on aboutbfs few monts ago, it is proposed to be called ALPIM and might be included in the next editions of medical reference diagnostics books.
Look, my dear, I spent a week in crisis center right now (civil war has got me, I had almost boken friendship lasitng 10 years, my daughter was coming to me with her own serious problems, I had this, that and those and ended up in a hospital). My neighbourgh was intelligent lady with the 'steel balls', you know what I mean - the one stronger than many men around her.
She could not go out of the home for seweral weeks. She could not go in metro or city bus. She could not walk the stairs.
Holy crap! Smart, nice, elegant. intelligent, - and broken with 'stupid' phobias.
When she told me a bit about her family history, I understood why she has those phobias - but she had to got that by herself.

On my point of view, good crisis care for several weeks and a support program for up to one year may help you to find yourself again. I do not know if it is possible with two kids left at your care, but believe me, we are not "crazy' or 'stupid' but just behave in the way which in fact reflects some other problems we may have and some other needs we may need to be satisfied.
You lost yourself in the idea of being deadly ill. As far as I remember, you went into what is callled existential crisis - you survived some relative's death, and it affected you in quite expectable way...

But what I also know - that many fellows who managed to find themselves back in the mist of 'somatic disorder', regained their relationships or got new and even better ones.

so my hopes are with you
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Re: Big holes in the back

Postby German2 on January 6th, 2016, 6:15 am

It feels so good to read your words...and I hope you regained your power to cope with all the trouble you are dealing with, esp. under the bad conditions....You are such a empathetic person...it is always so good to read your comments.
Yes, the first two days I felt like hulk hogana (with all the cortisone inside) and was able to carry my daughter all the way through the shopping center. It felt like I was touched by heavens energy and my daughter called me superman...But then the power left me again. I had very horrible dreams, something wanted to hunt me down and I tried to escape the dream. Something of this crap...then I realized that the holes in my back got even deeper. And it is indeed the location where I was twitching heavily before for many weeks. Now twitching moved to my right knee. It goes like crazy. My back looks to me like a moon landscape if you know what I mean. I bought me a blackroll and use it everyday for muscle relaxation. The tension goes from lower back over my head to my nose, where the pressure (like a drawing) ends.
Yesterday, heading a very special crisis, I called my husband finally and explained the situation. And that he has to look for the kids to not confronting them with my fears (I can hide, but my youngest daughter will know anyway. She is dedicated to fears herself and can read my thoughts, no chance to hide...). And really he came back. And I felt more save again. I was thinking about going to a clinic, too. That does not mean, my marriage is save again. But he came back to be present for he also feels responsible for the kids.
I have to change something in my life...you are right. But yes I don't know what. My behaviour therapy does not help me in any way up to now. Hope this will change .....

Thank you so much.. I will look for the note you wrote abut it and read an article about ALPIM roughly....all the best to you!! I really know I need some help...
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Re: Big holes in the back

Postby Yuliasir on January 6th, 2016, 6:29 am

try to find Geshtalt, psydrama or narrative therapy. they are not covered with insurance but behavioral therpay just get you TRAINED to cope, and this is LAST STEP, first step is understanding what the hell is going on. For me Geshtalt therpaist was the best. He never suggested any reason for my fears. he just asked - what is inside me? which voice I hear? how my body feels that? And I undesrstood that in most of my fears I am still a little person, a child with the fears important for a little persdon but not more having so life-saving importance for an adult person I am now. I reunited with my family, I become a friend and a supperter for my daughter... Just do not let your therpaist to pretned he or she kjnows in advacne what is wrong with you. Meet your drama again. Face it.

Exsistential therapists (those following Victor Frankl shcool) may also be useful as they deak with thingkl like death, war, our own mortality etc. Frankl itself managed to survive a death camp so he was knowing well what does it mean to feel (and to be) doomed.

This is like in Dracula - to fight the vampirism (which in fact is very similar to obsesive disorder - no medical changes (Mina's blood was tested for she was supposed to have anemia), agitation, moon phase dependance (we are also weather abnd season dependent), need to suck blood (seek reassurance), complete exclusion from the life of normal people etc.) - to fight vamire you need two things - a doctor and a journey to the unknown route. Then face it. Then fight it.

Wish you to find a doctor and a route.
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Re: Big holes in the back

Postby leroyb on January 6th, 2016, 7:57 am

I came within an inch of losing everything in my life German and only way I saved it was to stop obsessing about what is wrong with me. It is hard for other people to understand what is going on as outwardly you look perfectly fine so when the doctors have cleared you and you keep on obsessing they believe you are being selfish and crazy. You have been cleared as far as current science is capable of so you really have no choice but to live day to day and as time goes on and you are still alive you will slowly, slowly come back to normal but don't keep waiting to feel exactly how you felt physically before all this started as that will likely never happen.
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Re: Big holes in the back

Postby German2 on January 6th, 2016, 8:34 am

Yes leroy that is exactly what i expect it to be.... i just have to learn to deal with all of my physical problems. actually GERD is with me. from all my pain medication i tthink. I try to get back to normal social life..Step by step..and there are so many options. My pain doctor invited me to give a try to all medications available. From cortisone over antibiotics up to the ultra heavy pain killers. Others offer me to try on the psycho drugs from Lyrica to baclofen and whartsoever... there is more than one way to go when s hool medicine diagnostics failed. Confusing lot. Not to mention the alternative sector which i tried to follw in 2015 .......thanks to you all!
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Re: Big holes in the back

Postby German2 on January 6th, 2016, 5:07 pm

...and if pain is a definite exclusion for als then I really don't have it. I have so strong pain meanwhile - burning pain throughout my whole arms are back, plus stabbing pain in the back, muscles so thight I can hardly breathe, which now hurt too. I am through with this crap...I just sit here with my heating tool for my back, hardly able to move...
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Re: Big holes in the back

Postby Yuliasir on January 7th, 2016, 12:51 am

burning, shooting and stabbing pain is a classic mark of neurogenic pain. not neurodegenerative!!!! in ALPIM P means pains - fybromyalgia, bowel pains, shooting pains, etc. - emerged without any visible inflammation.

it is becasue our body has lower pain threshold and often because the central processor is so messed up that it takes normal tactile or proprioception (body position) signals for pain. Another reason is a surgery when your nerves are caught in the post-operative scars, but this seems not to be your case. Conpression traumas are also causing neurogenic pains. Neurogenic pain could not be treated wth aspirine, ibuprophene and other anti-inflammatory drugs. Tranquilizators, antidepressants and other special prescription drugs are usually used with some effect.
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Re: Big holes in the back

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