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Situation after 14 month

PostPosted: September 21st, 2014, 1:00 am
by German2
Hello together,

I feel very anxious and depressed. Need some opinion:
-2 years of symptoms
- 14 month of twitching
- clean EMG after 6 weeks of twitching
- no clean EMG after 14 month:
reinnervation signs in some muscles left hand, one muscle there with spontanous activity and no reinnvervation signs, dx: sulcus ulnar nerve syndrom,
one foot muscle normal, upper back muscles ok
- mep and sep ok
- normal clinical and strenght test after 14 month (3 neuros)
- one neuro discovered a slight weakness of left hand, 2 did not
- one neuro discovered a one sided ulnar nereve syndrom, one a double sided, one none (each based on nerve conduction test) - all in the same month!
- I have a hashimoto and antibodies against my nereve system
- one year ago I had muscle decline in the middle of my palm and weak grip (left hand). It was reversible. Now I have muscle decline above my ringfingers and pinkies (both sides) and between thumb and index finger (thumb got weak, but got slightly better now)

I personally can see that not just my hands got smaller but also my left wrist (weaker than the other) and lower arms (both sides). my left leg is buzzing since a few days (foot muscle of right leg was tested in EMG and ok. Left one not testet.
Up to now, rule out of MND (als ambulance), rule out of polineuropathie (hospital, due to mep, and sep - both fine)

Can anybody give me his/her opinion?

Thanks, German2

Re: Situation after 14 month

PostPosted: September 21st, 2014, 4:12 am
by Yuliasir
Well, German,
you report that you had several competent medical opinions, which, despite on some inconsistency probably caused by borderline nature of underlying conditions, point to compression neural trauma in upper limbs (probably mild one as it not always shown on neuroconduction studies and considering the fact it still does not prevent you from efficient use of your hands).
You also have hashimoto diagnosis which is known to affect mood (specifically causing depression, anxiety, and genrally low mood due to decereased function of thyroid gland).

Also 2 years of symptomes effectively points out of any debilitating MNDs. Usually people affected by neurodegenerative disorders have quite notable neurological losses and diagnosis whithin this timeline. Saying notable losses I mean not intermittent weakness not always found by neuro on exam, but paresis, i.e., loss of ability to use the hand. Or walking assistance/wheelchair in case of lower limbs.

Did you ever tried any thyroid hormone treatment approved and monitored my neuro? I remember that my mom's colleague with low thyroid function was really thought she is dying and three months of hormonal treatment really brought her back to life. I had seen her before and after and I can say it was really like coming from zombie to a living person.

I remember you had bad experience with psychiatric drugs due to serotonine syndrome caused by another incompatible drugs intake but otherwise - did they helped you in lowering your fear and anxiety? probably good and well controlled program (I mean a person taking such drugs should report his or her condition frequently to a doctor and the program should be corrected if necessary) would also help you as nobody should really struggle with fears alone (and therer is no other means for deep fears and anxiety as counceling does not help if neural paths are affected and we need first to bring amygdala down to normal activity level and then start councelling). it is also a long story (mine was over 6 months at a very low dosages), so one should expect to give some time to the process...

I know you strongle dislike the idea to be in psychosomatic corner, as you say, but if your body functions seem to be affected in that part causing you extremely bad feelings and lowering your life quality, shouldn't it be cured first? Especially becasue those issues are known to be treatable?

Your medical tests explain your current condition pretty well, I mean the findings correspond to your physical condition as you describe it, but as for your mood conditions - no EMG or MEP or NCV could show there is soethign wrong in this part...

Re: Situation after 14 month

PostPosted: September 21st, 2014, 6:00 am
by German2
Dear Yuliasir,

thanks again for answering my post! Yes, I am taking thyroid hormones since May..And in the very beginning it helped very much against my condition of anxiety. But then, after taking low dose of cortisone, I had spontanouos muscle loss in both hands within few weeks. No doctor can explain, why this happened. Fear came back. Even twitches came back, which were low to that time. Maybe I am not in a good hormone adjustment actually (I had a thyroid over function one month ago and had to reduce massively). But the spontanous muscle loss is an indicator for me that there is And it seems not a progressive but a batch-wide course..Most of the muscles in my hand just present with reinnervation signs. No new denervations. Just the muscle below my pinkie presented spontanous activity (without reinnervation signs and normal amplitdue). These two pnikie muscles are hurting since two years and were the first to twitch (2 years ago).

I am also taking antidepressant since a year (Mirtazapin), but it seems not to help. And I have counselling already, but it is not a very good one. My therapist is most time on a holiday so that I am seeing her around one time a month. But I had to wait a half year to catch this what can I do ..switching seems not possible. But indeed I have a severe depression actually, for nobody found a key, to help me. Not even in hopsital. My local neuro thinks I have a autoimmune pnp but this would mean, flattened reflexes and would have shown up in mep and/or sep, they told me in the hopsital. So no chance to get IVIG up to now (this is a very expensive med, consisting autoimmuneglobuline. But I guess without any paralysis your wont get it)..

In addition there is a lot of pressure on me actually. Me and my familiy are goint to move in a new house in three weeks. And I am a wreck...bodywise and mindwise...I hoped that I can clarify my condition before that. So I can be sure it is nothing nasty (we move to the very countryside and I need a car to get from here to there and back). But now I am as unaware as before....I really don't know how to move on. Next week I will start with acupuncture to calm my nerves down. It is offered by my private neuro...I'll see if it helps a bit.
Thank you so much, German

Re: Situation after 14 month

PostPosted: September 21st, 2014, 7:21 am
by Yuliasir
Stressful life never helps :((( probably you may tell to the family that despite on the fact that you seem not to be deadly ill on the basis of the medical investigation, you are still sick and experience lack energy so 'please leave me and let me recover'... or something like that... do not think any involvenetn in serious decisions could be beneficial for you right now :((( I had my own stress failure after several issues which by itself were not serious like my husband had chainged his job (and had to leave home coming back only for weekends), my daughter got visual migraines getting half blind and scaring me to death, I had three months of repairs in the home and finally my old frined came to visit me with the 10 years old daughter... and I got a panic attack and was really crap for about 6 months :(((

as for the batch type muscle loss, whatever it could be, it is still not a motor neuron related issue, according to your EMG and other tests... hyperactive thyroid also causes weight loss (sometimes in a form of muscle degradation) and Hashimoto is in fact a mix of overactivity and hypoactivity, and only later it comes to rather hypoactive type...

full of sympathy fpr your tough case

and full of hope for better

Re: Situation after 14 month

PostPosted: September 21st, 2014, 7:54 am
by German2
Dear Yuliasir,

you are so right....But as a pitty...we did already sign the contract for the house and have to leave our present home...I know I am facing the breakdown. I know it will come. My husband is promising me, he will do everything on his one. But this is not possible.

Today I have a again resting pulse from above 100! (since weeks it is around 90 and above 100) I don't know whether it derivers from Hypo or hyper thyroid gland...My blood pressure is meanwhile on a very low base...So I feel like crap! Today I am short before leaving again to hospital. But god knows which one...

I am so glad, that you responded Yuliasir...I feel half death today, until I checked my pulse again I did not know the reason...

Re: Situation after 14 month

PostPosted: September 21st, 2014, 8:46 am
by Yuliasir
High resting pulse is consistent with hyperactive thyroid (and high anxiety), and with low blood pressure (heart rate may be increased to compensate it). I have resting HR about 90 for as long as I measure that (and slightly low BP), it is considered as high margin for normal range, but 100 and over is usually a tachycardia.

So probably your thyroid palys bad games with you. Are you also sensitive to low temperature? Feel a hot flushes? This is also associated with high thyroid hormome levels.

Moving to a countryside is really a stress, especially if you do not like it or feel it would be inconvenient :( this one by itself can kick a sensitive person out...

but maybe you will then have a time just to lay down, maybe cry, have a good sleep (which is essential to be honest to feel better) - and maybe come back to your endocrimologist to see how your thyroid is going on...

Re: Situation after 14 month

PostPosted: September 21st, 2014, 9:39 am
by German2
Dear Yuliasir,

to my estimation I must be in hypo activity of thyroid, though you are right. It normally happens in hyperactivity. It also happens in the opposite case, though it is not an official symptom. But it happens from time to time. And yes of course, I have a high level of anxiety...All of these physio therapists and GPS telling me it could be als, the experts telling me its not, the strange findings in EMG...I am in panic mode...
I had my first compression syndrom in 2011, in my left upper leg. Could not walk for feelings in upper leg for a year...No orthopaedist was able to diagnose me with meralgia paresthetica (which neuros were telling me afterwards). Now two further compression syndroms...very strange...I am afraid of what comes next. I feel totally weak. Like my hole body is shivering. Feeling hot, burning skin. And after a wakl outside very cold clammy skin..So many strange things happen to my body. Some few days are quite normal. And most of the time I feel just like staying in bed all the time.

Re: Situation after 14 month

PostPosted: September 21st, 2014, 10:10 am
by Yuliasir
As far as I can see, your EMG finding are consistent with mild compression trauma, not with degenreation of motor neurons. I would rather believe neuro specialists, not GP or physio as they do not have enough medical experience and testing means and may confuse you pretty well (GP actually knows a bit about most of medical consitions but not in details, while physio therapis just CAN NOT diagnose you despitew on his or her knowledge of muscular issues - give that to doctors for your own mind safety).
Leg compression syndrome is rather common... I wonder if you have any hypermobility... hypermobile people are extremely prone to compressions due to extra mobility in joints. Skin burning is parestheisa, which happens to us BFS people quite often, hot feeling indicateds again hyperactive thyroid...

I think for some reasons your body may really tell youi that you may need few days or even a week in the bed.
sometimes we need that.

Re: Situation after 14 month

PostPosted: September 21st, 2014, 10:54 am
by German2
Dear Yuliasir,

yes, I stayed in hospital bed for a few days. Which was fine...At home it is a bit difficult with two small kids. Tomorrow I will have a new blood testing for my thyroid. I will see in which direction it should be adapted. My neuro suspects me to have also an adreanal glands weakness, due to hypophyse disfunction. This was already discussed 10 years ago (where hormone dysfunction first time appear in me)...I had a very severe accident when I was a child. My skull was damaged and brain might also be harmed (hypophyse?). I was in a coma for a few days....

Actually I try with some walk in the nature, to calm my nerves down. 4 days waiting in hospital, whithout any answer, with a few severe probable diagnosis in the list have given me the rest.

I am indeed hypermobil :D . It's in my family...My daughter is extremly hypermobil. Her fingers are just bent and can be streched in any direction. :|

Re: Situation after 14 month

PostPosted: September 21st, 2014, 11:16 pm
by Yuliasir
Ah that explains a lot - bot cerebral trauma and hypermobiloty can add to your condition.
I am hypermobile too and I found that at least a third part of fellows have this condition. Hypermobility or Ellers Danloss syndrome is a genetic condition and it affects many systems - including musculosceletal, central and autonomous nerve systems. Hypermobile people are abuot twice more prone to mood disorders compared to average population, they are extremely prone to twitching, sceletal pains (joint pains), thyroid disfunction is also more often in them...

A had a thought also that you may have something with pituitary gland (hypophysis) becasue it often causes mood changes, variation of ability to keep tempreature, weight loss or gain otherwise not explainable. Ususally Xray, MRI etc. can give a good estimation of its status, becasue hormonal tests should be rather in a screening way - taken during the day with frequent intervals, becasue this gland operates according to its own schedule and not always keeps the same levelof hormones during the day :)

But even if oyu pituatary is OK, pronounced and clearly familiar Ellers Danloss Syndrome may at least be an explanation of many issues you have. read this site for the keyword "hypermobility" and you will find that it is much common here compared to general population. Looks like it is a part of syndrom picture (I mean mood disorders, twitching, weak muscles, etc.) High HR and low blood pressure are also common :)

Re: Situation after 14 month

PostPosted: September 22nd, 2014, 8:31 am
by German2
Wow Yuliasir,
there is much accordance with me!!

...vertebra sliding, Spondylosis deformans, Stenosis in throat spine, Skoliosis, Kyphose, herniated discs, filament inflammation, arthrosis, . This is all now listed in my report. That is all found in me. Maybe this is a combination of all those strange things, causing partly my trouble.

Thank you very much for this info!!