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Re: New situation - need support

PostPosted: April 2nd, 2015, 11:23 am
by German2
Never mind...I do not see any other chance anyway. What bothers me most is the regular weired feeling in my feet. And if I take a benzo, which is mucle relaxing, it vanishes. So it seems to be a high muscle tonus, which is not a good sign.
Secondly my legs feel weak...
I have sticky liquid in my throat since month, my neck hurts...and my head seems to fall into a strange position (I am told by a dentist)...

So how are my chances to have something benign..? I do not know....

Re: New situation - need support

PostPosted: April 6th, 2015, 8:18 am
by German2
Finally I do have the outcome of my metabolic analysis, which was made in a lab in the US (selfpaid, extremely expensive).

Strong Vitamin B6 deficiency (measured due to certain markers like Xanthurenate and Kynurenate), which is in line with my Kryptopyrrol disorder
acute oxidant stress - mitochondrial disorder
some changes in my gut which create neurotoxic D-Lactat
and some inflammatory process in the brain (much to much Kynurenate, which is also present in MS or Shizophrenia).
And I have high end Quinolinate which is present in Alzheimer..

I was recommended to take some supplements and to find out what creates the inflamation in my brain...

Meanwhile my symptoms drive me mad:
weired feeling in lower legs get stronger (I think it is high muscle tone) - I discovered that a special footbath with cooked ginger helps against this weired when lying in bed in the evening.
My depression gets also stronger and stronger (from the inflammation?). It is unbearable meanwhile...

My situation is not better with my dad lying in hospital and no ability to return home but going to a rest home. I have to take care for that not knowing how...

Re: New situation - need support

PostPosted: April 6th, 2015, 2:54 pm
by Buzznerd123

Re: New situation - need support

PostPosted: April 7th, 2015, 3:26 am
by German2
Hi buzznerd,

thank you for your response!! Ok, what the B6 is concerned, I know that I have to be careful. But as I have a profen Kryptopryrrolurie, it is very probable that I have to take it on a regular basis. In a KPU you have chronical Zinc and b6 deficite...This was measured at a German lab, from the morning urine. It is less probable to have too much of it.
But you are right...I will have the b6 and zinc levels checked after I while...I do that anyway with vit d regularly...If my problems get worse, I will do that earlier than planned of course..

What the markers is concerned, ok, I believe completely it is like you said. But as standard medicine is not offering any treatment (not even a dx yet), I try that recomended way (of a doctor in Germany working with that lab). What helps me very much acutally is the ingwer footbath against this high muscle tone/semicramping ;-). Even the foot twitching got better with it...
And the infusions helped me to get back on my feet again. I was completely lacking power for daily life. It was like freezing to death...such an inner cold which is hard to explain.
But I highly appreciate that you tell me the pros and cons and what science is saying about it all...I know I am experimenting :D


Re: New situation - need support

PostPosted: April 11th, 2015, 11:33 am
by German2
Today was the first day (it has not yet ended though) without weired feeling in feet - which means muscle tone quite ok today in this place.
No twichtching since about 2 weeks (apart from my hotspot foot cave). Muscle pain in lower arm better. nerve pain in sulcus area still there from time to time.
Therefore in the evening again weak hands (especially the left one - ok might be due to sulcus ulnar nerve syndrom. But not sure, because feet feels s.t. weak, too)
in general better energy household, freezing (apart from hand and feet) almost gone - though I have still some bad days where I'd like to stay in bed (not possible :| ).

to summarize: mixed situation. Some symptoms better, some worse.

My regime:
Almost no gluten since about one month (but to be honest I don't believe it is the cause), almost no sugar about the same time,
vitamin infusions (especially b6 which I am lacking) since one month, a lot of supplements, one green smoothie with amino acid per day.
Started a special manual therapy yesterday (myoreflex), to get rid of the high muscle tone and disbalanced muscle probs..
ginger foot bath against cold crampy feet.

Re: New situation - need support

PostPosted: April 15th, 2015, 12:36 pm
by German2
Now I am back from neuromuscular ambulance, who did the NCV again and also an EMG in three muscles.
Outcome: confirmation of sulcus ulnar nerve syndrom left (this time with speed of 38 - it differed between 26 and 46 the last 2 month..), nerve conduction of motor nerve in leg was normal this time! (I am sure that it is the outcome of my strong supplement infusion regime whith b vitamines and co....;-) Last time, it was on the edge)

EMG: abductor digitus minimi, slight chronical neurogenic change, like last time (could be due to sulcus ulnar nerve syndrom), muscle in my right upper arm was ok and also of my right upper leg, one muscle, was ok. She pooked the needle very long in different positions that time. First time, that I really had pain. But anyway..

The doctor said that she has to analyze it again, but on first glance everything seemed to be all right. So for me it is a release...I hope it does something good to my new cramping situation and I can relax a bit more....:-)

Re: New situation - need support

PostPosted: April 16th, 2015, 1:31 pm
by Xina535
wow your last post seems REALLY promising!!!! I am happy that you are inching closer and closer to improvement and reliable Treatment! Keep moving Forward, "toi! toi! toi!"

Re: New situation - need support

PostPosted: April 17th, 2015, 12:52 pm
by German2
Hi Xina,

thank you! I had a really good day after the investigation. But my pain was back so strong today (wrists, lymphatic swollen legs and feet, muscle pain), that I am down again. Still not knowing what's going on...The inner side of my handwrists are so painful, that I can hardly lay them down today (my therapist confirmed this area is slightly swollen on boht sides). I have also problems with my foot ankles meanwhile (painful s.t., new dents...) and - new - cramping muscles respectively high muscle tone everywhere..
So without any answers it is not comfortable...And I have that depression which is so could be absent for a day, but with the pain it is back immediately...Maybe I should agree on a new medication. I don't know...

I know you really don't feel better actually, but you have a treatment that seems to help! So it will get better for you, I really hope for you...!! I am reading your posts, but sorry that I cannot contribute, because I don't know about your questions...But it sounds as if it is quite clear, that it is inflammatory...which is treatable.