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So tired from all of this - after three years

PostPosted: June 17th, 2015, 1:52 pm
by German2
I was in a pain clinic for a while, so I stayed absent. I had a lot of massage and short physio lessons. And I got some medication against high muscle tone. But I was not allowed to proceed with it...because it makes liver damage...

So my first day out of the clinic family life is exploding. I am now responsible for my father who has now dementia. I have to organize his whole situation now..And today I drove 4 hours to a Borrelia expert (8 hours on the road). I have waited one year for this appointment...After the clinical examination he was sure, it is something inflammatory and most probably borreliose, he stated. He wanted to start with an special antibitotic/ Quensyl regime but I want to wait on the lab....I know it can be false negative. It was positive one time, and he said that there can be false negative but most of the time no false positive outcomes...He also checkes me for Bartonellose...Chlamydiae pneumoniae is confirmed anyway. That are all co infections...

He mentioned that the only other option would be ALS....There was it again my small cosy little problem. I feel so sick and exhausted, have to manage the life of 2 small kids and the personal and financial situation of my father (which is a lot of work) and I feel, I cannot stand this all any more. My todo list is as long as the toilet tissue....

My hands start to feel clumsy (which might be due to the permanently rising muscle tone. But my lower arms really look atrophied...The only advantage I made is that I could stop the feelling of beeing choked around my chest. I try to breathe deeper now..

I just can tell that after 3 years of hot period of symptoms (first symptoms 5 years ago and first appearance of similar problems 16 years ago) I am so tired from all of this. Actually I just try to get everything in place so that I could leave...As my symptoms proceed, I am no longer expecting a good outcome. Next week I have a skin biopsy to check for Ehlers-Danlos, also far to go...(ok we in Germany are used to short distances ;-). But for me it seems to be inflammatory, because I feel like it. And also my brain is involved. I am feeling it goes down...I cannot concentrate on anything. My depression is there again....Last but not least, I am seeing an MND expert again at 9th of July...but also to check for other things. It is a pitty that they cannot check for stif person syndrom there, but I did not know before...

Sorry for this negative contribution. But it goes beyound my power now...

Re: So tired from all of this - after three years

PostPosted: June 19th, 2015, 8:28 am
by Buzznerd123

Re: So tired from all of this - after three years

PostPosted: June 19th, 2015, 1:33 pm
by German2
Hi Buzznerd,

no, it was not that one. It was one from Pforzheim. But thank you for the warning! I indeed wrote an email to this clinic...I will be sceptical, I promise, for I expect it more likely to be autoimmune. For an inflammation of my brain is aready indicated due to certain markes. This can also be caused by borrelia, but as I am also photosensitive, had ulceras in the past etc..I expect it to be like lupus or so, with CNS involvement....My hands are clumsy know, I have swallowing issues, joint and muscle pain, feel like I would have an inflammation again, but I am so bored from all of this. My main fear is now, that my brain leaves me first...

Re: So tired from all of this - after three years

PostPosted: June 25th, 2015, 1:29 am
by German2
I am back from Ehlers-Danlos Expert. He did not do a skin biopsy for he thinks my hypermobility is not my problem. He is sure about a neurological problem.
And he also sees muscle waisting at my lower arms.

So I have high muscle tone
muscle wasting at my lower arms (painful)
starting to get weak hands (not always, just depending on muscle tone)
twitching under my feet (with moving toes) since 2 years
high oxidative stress level (which is regarded as a trigger for ALS)
whole body wide pain. Including skin burning - and new, pain on the back of my foot, when wearing shoes s.t. seems to be a kind of neuralgy...

How are my chances to have something else than MND??
Yesterday my whole world broke down...