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clear atrophie of left lower arm

PostPosted: January 30th, 2016, 5:14 pm
by German2
...ok now I am there. Even my husband sees the atrophy on left lower arm very clear and he told me it got worse during last weeks. It would have not ben like that when I was presenting it to ALS ambulance.
Meanwhile I can not sit straight..My back muscles do not hold...They are so tight that I have to stretch my ribcage more times a day. And it cracks very loud all the time...I know this is all not normal.

Some of you might know my story.
2,5 year of very mild twitching and a lot of other symptoms. Exclusion of MND a few times. But got worse now..I do have swallowing issues anyway..
I have decline of mucsles in right arm, too but not to that extend...
and the most proofing indication is, that I can't stand weight. It hurts very much after doing with it

Re: clear atrophie of left lower arm

PostPosted: January 30th, 2016, 6:15 pm
by leroyb
picture of arm?

pm me for email if you don't want to post it.

You can compare to my arm.

Re: clear atrophie of left lower arm

PostPosted: January 31st, 2016, 4:09 am
by German2
I will email you today....thanks for sharing.

Re: clear atrophie of left lower arm

PostPosted: February 11th, 2016, 7:58 am
by German2
Feeling more and more tired and sick each day, loosing control over my limbs in the night and so on...regular swallowing and speaking issue... I wrote an email this night to Charité Berlin, Virchow Institute, for Immunology (not MND!!) This is like the Mayo for the USA in Germany...kind of.

I wrote my story and my symptoms (for I have now a clear idea of what it can be). I received an immediate call this morning with a short-term appointment. This is above all I expected...I thought if I would get an appt anyway then in a year or so...So maybe my idea- or to be honest, of my neuro - of what my desease could be is not that wrong...;-). He gave me that little hint in a subordinate clause: Chronic Fatigue Syndrom. "Think about that.." And I did some research. I found so many parallels...
It is more about to be tired. It is a systemical desease with muscle and joint pain and CNS symptoms which joined my party in the last fact it happens when viruses enter your blood-brain-barrier. And there are certain canadian diagnostic criteria which most of I can match as far as I can see....

In Germany we do simply not "have" CFS. It is better known in other countries. But as far as I can see there is no treatment or cure anyway...but to have a diagnosis other then MND would be good. So I am quite positive about that appointment. Which does clearly not yet mean I have the dx. But as I wrote my symptoms I think I match the pattern. The Professor there is the only one in Germany doing research with CFS...

Re: clear atrophie of left lower arm

PostPosted: February 11th, 2016, 8:24 am
by German2
In the US it names...Chronic Fatigue and Immune Dysfunction Syndrome

Re: clear atrophie of left lower arm

PostPosted: February 11th, 2016, 1:05 pm
by German2
I've done a small research, which of my pathological bloodwork was responsible for the invitation in a hospital which normally is not open to the public..exept the real severe cases...
I have got the answer...and the perspective with that desease is not much better. But they are doing a big clinical survey now with people with a potential immune defect like mine..It is related to the Epstein Bar Virus. I have a defect immune reaction against it and this causes cross-autoimmune reactions in the body... was not clear to me before...So my invitation was the outcome of that...I had an EBV and I did not developed the relevant antibodies..They are still missing. There are such a lot not nice conditions beside ALS..

Re: clear atrophie of left lower arm

PostPosted: February 11th, 2016, 4:10 pm
by leroyb
Good news German :)

I would take that too.

Today I swam 1 km. After 3 years of symptoms you'd think that should not be possible...........

Re: clear atrophie of left lower arm

PostPosted: February 11th, 2016, 4:46 pm
by German2
Hey...good story leroy!! I would really like to...I made my story too complicated i guess..They told me,..ok..Als or CFS there is no good or bad. It would both be worse..I hope it is else..
in first line it seems to be chronic ebv due to immune deficiency. And that can cause a lot of other deseases as subsequence (CFS, MS, arthritis, cancer....)
Maybe the reactivated ebv causes the new exploding of twitching and all other weird symptoms which worsened the last days. diarrhoea, strong pain (even under my feet) and more....I talked to an expert yesterday on the phone and he explained me the context of my bloodwork and ebv immune deficite. Why did no other found that before...?

...but to be honest, talking gets difficult. Because of wordforming AND becaue of thinking...the going gets really tough.

Today I received the permission of 4 weeks rehabilitation in a neurological clinic. I hope it can improve but first of all I am curious what Charité is going to find..

Re: clear atrophie of left lower arm

PostPosted: February 12th, 2016, 2:53 pm
by German2
searching EBV in this forum, I once again triped over the regimen auf BFSBurger....I read it in my early days here..
And really...I too had a quite strong diet regimen for about 6 month...avoided even coffeine in the end for my cortisol level went down (after a long period of beeing too high I guess).
I did avoid gluten and suger and milk and had sucess. My twitcching was almost gone in the end. Is the relapse of my twitching and my present horror body situation a result of falling back into old eating patterns? A second reason for the heavy flareup: they gave me a few days of highdose cortisone. All inflammations went down. I felt brillant. But then the breakdown came as afterburner (maybe the viruses celebrated a party while my immune system was down. And I think with the offered longterm cortisone regiment the doctor would have killed me...)

I still avoid gluten and Milk but I stopped avoiding sugar (now the sugar craving is back), alcohol and coffeine...(with an immediate effect of my blood suger. When I don't insert food the whole day I feel like dying....)

Maybe my heavy relapse now is not just because of the suspected ebv related immune deficite, but maybe due to the weakening of my health regime...
I know in my case I have to return to it. Otherwise I will need Antiviral meds and antibiotics soon (this is all already recommended to me by some doctors).
And it is not just EBV which causes my problems. I too have the Herpes zoster which broke out several times on my body, and also borrelia which are always marginal in all bloodworks.
I think a non inflammatory diet is crucial for me...
And I have to find a way to practice my muscles without risking an inflammation in them (this is what happend to me ...kind of exercise intolerance which I experienced since a few weeks)

I really can confirm that changing lifestyle (in my case food) contributed a lot to my health as long as I was strict...
Maybe it was good to trip over BFSBurgers post again...And I really have to work on my mental state which he streches as very important...

Especially now in a stage where I have the impression that my brain is conquered by some nasty evil thing, where my throat is so tight so that it hurts to swallow and even to speak, where my sole of foot hurt and went numb..and pins and needles everywhere...

here is the link to BFS Burger plan...I will try to integrate some more of the recommendations

Re: clear atrophie of left lower arm

PostPosted: February 19th, 2016, 11:55 pm
by leaflea
So much EBV here. Maybe it is another link? I also have EBV. It was blamed in my 20's for recurrent fevers, seemingly weak immune system. It is a thought. Certainly none of us have anything to lose by adopting a really healthy lifestyle. We can help one another to maintain these habits.

Re: clear atrophie of left lower arm

PostPosted: February 21st, 2016, 12:25 pm
by German2
Nice to hearing from you again leflea!! I think most of the people do have EBV. There are two options when it makes sick: if one have a reactivated virus or if theres no reactions in form of antibodies against a former infection. There is a special ambulance for the latter phenomenon at Charité (famous hospital in Berlin). I found out by coincidence that I have that lack of immune reaction. (EBNA1-IgG is missing by clear signs of a former infection. And now I am sure that the infection 20 years ago, where I thought I would die and stayed in bed for one year must have ben this mononucleose...). The re is a department espacially for EBNA1 negative people. In other countries there is more research and more knowledge about that then in Germany....;-(. Maybe it would be interesting for other BFS'sers to check that antibody.....

The subsequence of this immune disfunction could be Chronic Fatigue and Immune Dysfunction Syndrome, Multiple sclerosis, two special forms of cancer or other autoimmune deseases. I have an appt at one of just a few researches in that field in Germany and I am very curious what she finds out....I am told that the Chronic Fatigue would be the worst of all....I do not know but I don't have a choice anyway. I have to take what I get...And I am hoping to get a diagnosis finally...

Meanwhile I have strong feelings of paralysis for some hours at some days...It comes and goes...

Re: clear atrophie of left lower arm

PostPosted: February 21st, 2016, 11:35 pm
by leaflea
So strange! I've known a couple of people with Chronic Fatigue Syndrome. It may be the worst for EBV, but not the worst of all! Right? Both people have mostly recovered. My course varies. Went back to the neurologist (third time to him in more than two years). He seemed more interested this time. He said he had another woman patient in the meantime who had been diagnosed "psychosomatic" for a couple of years and turned out to have Isaac's Syndrome. My twitches and cramps have reduced, but not gone. Instead, I now have much more stiffness and SWEATING! I have about 20 hot flashes a day and not sure if it is menopause or what. I have some estrogen patches but am afraid to use them until I get the results of my hormone tests (drawn Friday, it is now Sunday). It is expensive and it is risky. The sweating would be typical of Isaac's, as is the stiffness. I also salivate more than an average person and, as you know, have very thin hands and wrists. Interestingly, my wrists sweat, but not my palms. The forearm, just above the wrist, seems more fleshy than before bfs, and my ankles swelled before bfs, but are very thin now. The stiffness is mostly in my ankles and neck. The neurologist is repeating a paraneoplastic panel, and I sure do hope that is negative. I had VGKC antibodies present, but insignificant small number, a year ago. To me, I don't like having them there at all! How I wish this would all just GO AWAY! I expect a phone call about those lab tests tomorrow as well. Wish me luck!

Re: clear atrophie of left lower arm

PostPosted: February 22nd, 2016, 8:43 am
by German2
Dear leflea,
of course I wish you luck! You will know soon! I am sure I will also be checked for paraneoplastic syndrom in Berlin, for EBV can cause lymphoma..and that can cause neuromyotonia as I learned know...I have also the stiffness and in addition painful forearms which get much thinnner. And I havve strong pain in the neck and back, down the spine....This is since several weeks. I had these sweating atttacks a few times...Actually they are over...

Drop me a line!

Re: clear atrophie of left lower arm

PostPosted: February 22nd, 2016, 12:58 pm
by Bibi
Nice to hear from both of You , i have followed You since i Joined in 2014. Now i have pain and stiffness in legs and hip , and The newest , pain in left arm reminding me of my frozen Right shoulder which started in 2012 and lasted until 2014 just before i discovered The fascikulations . I also have cronic heartburn , lump in throath and sweating. Feeling very miserable and i consider to try akupuncture . I am going to an neuro in june !

Re: clear atrophie of left lower arm

PostPosted: February 23rd, 2016, 9:37 pm
by leaflea
German 2 and Bibi - not sure how comfortable you are sharing this, but there are SO many posts directed toward the ladies, hormones, pregnancy, etc... I have new personal info and thought you two might be interested since we are in same age category. Still no VGKC results, but hormone results. My sweats seem a lot like hot flashes, intense and frequent, but like many other women I've seen describe them. But curious I'd get them now.

I had a hysterectomy at 38, so I don't know what is going on in that department. But, the hot flashes and sweating have been INTENSE the past month. I thought I must be starting my "change." Had hormone levels drawn last Friday which indicate I'm done. POST. In all likelhood past. So, now I have a couple thoughts...bfs probably coincided with peri-menopause...what is the significance of the correlation. I recently saw twitching and other things associated with menopause. Or, is it these menopausal or peri-menopausal women have bfs?? and why in the world would hot flashes start NOW? I remember some very mild ones about 6-9 months ago that were kind of amusing and dismissable, not any more! I'll be 49 next month. Would be interested in your experiences if you are comfortable sharing.