Big holes in the back

[German2]

I think I am there now...since weeks twitching in my back..then the pain in the back...and now I realize that there are big wholes in my back on both sides where the pain is. It happened more ore less overnight. And it is so obvious, that my husband agreed. He is normally very reluctand with that. The last days I have had vertigo, problems to keep my head high and problems to walk straight ahead...Now it is going so fast...I don't think there is much time left. In 2 days appt in ALS ambulance...how to stand those days. It is a horror trip!! My husband he has no words for me...anyone out there, helping me with some comfort? I know it's over...

[Yuliasir]

Dear German2,
it is hard to comfort a person who is awaiting for the worst (I know that by my own experience).
I really do not know what to say. If your visit to the ambulance would lead to MND diagnosis, it would be at least a clear outcome, and probably, by the fact of clear diagnosis, it could give you some peace. But if not - as it was before - I'm afraid it would not make you feel better, as you still have no idea what is going on. So it is a real horror trip, I agree.
I could only virtually hold your hand, abnd that's probably all I can do.

hugs
Yulia

[German2]

Thank you Yuliasir, you are right...ending up with no diagnosis would on the long run also be not comfortable, just a release for the moment. But my body is degenerating for some reason....And it is so hard for me, that I have no one to talk about it. I have to be lucky that my husband cares for the kits...I feel very lonesome.

[Yuliasir]

do you have somebody - a priest if you are a believer, a therapist, just a close friend to talk about your status? When I was in my worst fears and was annoying all the family with the awful pictures of my future, my husband, at least, said reluctantly that he would not leave me until the end. He also was not very suppoting in my fears. Nobody ususally is. But I had a therapist whos was staying beside me with my most deepest fears. And that had helped.

Uncertainity is one of the most killers for us. Being certain about dreadful diagnosis, one still could plan the rest of the life and regains CONTROL, which is important. I remember that one of the fellows, Tobias, who was falsely diagnosed with ALS, told in his story that after his diagnosis was cancelled, he first regreted about that. Because yes he was granted with his life back - and had to return to job, etc. while he already had planned some at least few months of peace, travelling and just a complete control. Disease might give him minimum few weeks of happiness and control he never could allow for him in healthy condition - and he lost this gift (but recovered his life).

I do bot know what is going on with you. But I have an example in my own family, when my granny had 20 years of torments (real torments) just becasue of IBS. It was 'all in her head' - not in the head but in the soul, heavily injured by hard childhood, ukrainian famine of 1932 and war. IBS pains are neurogenic and could not be relieved by regular drugs, and who would prescribe opiates to an old lady not having cancer (even in case of cancer it would be a problem in our country). She was really badly suffering on my eyes for 20 years, sure she has bowel cancer, and really pleading the Death to come and take her, and died in 88 years due to stroke (today is her memory day, that is why I remember her, maybe). And there was nobody to heal her soul and stop her pain journey.

If the testing would not reveal nothing going on in your body - then I think, after 2 years of feeling bad, you would ned to turn to your soul, to your personal history and journey to see what is tearing you apart.

In any case there should be somebody near you physically - a medical person, a spiritual person, a coach, a freind - somebody has to be, as nobody has to go solo on this way.

[guitarguy11]

Regardless of the outcome, my prayers go with you. Hugs from a distance.

And I agree with Yulia. You need someone to talk to and comfort you. And even with a supportive spouse, I think someone else is important. Sometimes we can't tell a spouse everything we are feeling.

[German2]

Dear both,

it feels so good to read your comments! Thanks!! I stopped bothering others with my story except my husband. As you probably know, it is a lonesome journey...But after a long waiting period I have a therapist now, which I meet once a week. I cannot say, if she is helpful in my situation because she is a very structured and distanced person, but I meet her tomorrow. Actually she seems to be my only option...As I know from my mothers story (she died with 49 years from cancer) it is not very common to talk about sickness. And even if you don't talk about it and just have the look and feel to be sick, people regard you as somehow weired....Even in the family...I knew that before.

[leroyb]

Yes German. I was surprised by reaction of relations who even now completely refuse to believe anything is wrong even though it is clearly obvious something is. I think I watch too much TV and expected a "we're all in this together" attitude and got the opposite.

[German2]

It is kind of natural that even best friends get bothered if a story lasts such a long time (like mine for ex). But I experienced that reluctance or misbelieving or not talking about even in families. And even knowing it (I had a long period of sickness when I was a child) it astonishes me againg to make the same experience....And if the doctors don't know what you have it is even worse..

[leroyb]

Yeah people get tired of it especially if doctors have just shrugged their shoulders and said you are fine.

[Yuliasir]

distant and structured therapist may not be a bad case - if you come with the right query, it usually helps.

I personally was working with Geshtalt school therapists who usually are not constructing your case but exactly follow your story trying to understand what it means FOR YOU, not for them but CBT (which is probably your therapists's school) also could be helpful. Just ask right questions and put YOUR goals as a priority.

[German2]

Yes, Yuliasir, it is that kind of therapy...Good to see her today:;-)

I am back from my muscle therapist..she thinks my new "holes" come from my muscle tension everywhere and that those muscles were under too heavy tension for too long time. Ok, it is her approach to explain that phenomen. For me who experienced a period of twitching esp. there and in the intercostal area and pain before the holes appeard, it is nevertheless frightening. I will see what the expert says tomorrow. I am quite comfortable with the idea now, that my husband accompanies me...I did not ask for that.

[German2]

Hi there,

ok, I am back from ALS expert and he gave me the all clear, without testing the reflexes and without EMG.
He did not see any atrophy (though all others including my neuro did), and he tested with ultra sound my arm muscles. He said there would be just muscle without any fat tissue on it.
Then I had a Nerve conduction speed test which was "picture perfect". And he said, due to the length of my story, he could rule out MND completely an he recommended me not to visit any other docter any longer.

Where am I now? Of course I feel very released....but I know there is really something wrong with my tissue (maybe it is fat atrophy) and muscle tension. Confirmed by a whole lot of physios and co...Yuliasir you were right. I did not get any answer. But for the moment it feels better, to have the all clear again.

[Yuliasir]

Yep I knew it with some high probablity... ALS specialist may not need testing as with two years fo complains it is expected to have quite visible signs, and you got a lot of satisfactory tests recently.
the problem is you are not accepting that and take all signs as dreadful ones.

Ultrasound by the way shows if the muscle is atrophied or not. Atrophied muscles are sclerosing (that is why the last letter is S in ALS) - they become substituted with fibrous tissue, similar to scar tissues, which has different echo charactreistics compared to healthy muscles. Fibrosis or sclerosis is clearly seen on US, and if it is not a case in your hands, then really it is not muscle atrophy but fat atrophy which is very common in our population and seemingly is not malignant.

You feel bad. You feel lonely. You suffer emotionally. You have real pains. You are extermely frightened, and noting can relieve that.
So really, as I said, you have to look inside your soul which is tormented and tormenting your body in an endless circle. I do not mean your pains are not real. They are. But you would not have power to accept you are not dying without investigation of why it is so important for you to be dying for the last two years and maybe even longer.

Believe me I know that on myself (I am prone to depressions and negative thinking). People NEED to be desperate. YES THEY DO. Some of them. Not everybody. For various reasons.
If you'll find why you need to be dying and frightened, you may found the way out.

[German2]

Yes, Yuliasir. I was so convinced to get the final dx today...and now it is so far away.

I have chosen a CBT therapist, who is practising EMDR, which is a way to get cured from traumatization and according pain by eye movement. It is a scientific approvedand evalutated method which you might know anyway. Though she was not helpful yesterday...she was sooo tired and told me that my energetic appearance would be admirable for my horrible situation...;-(. After all I was in the mood to ask whether I could help her with something. She looked so sad and exhausted..But ok. I did not. But I am looking forward to try that EMDR out next appt. She is certified in that.

A word of reassurance to all the twitchers out there: ALS Specialist told me that twitching is a very normal thing belonging to daily life. He would have it always, my neurosurgeon, too by the way. And he said, if anxiety accompanies that, it gets worse (in my case I am not a very strong twitcher, just my left foot is 24/7 twitching).

[guitarguy11]

Excellent news. Do EVERYTHING you can now to move on and not worry. Your story matches many others on this forum that anxiety and stress makes the condition so much worse. Run away from the forum if you must, but move on, run from the worry of ALS and take care of yourself.