Doubting the EMG

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Re: Doubting the EMG

Postby jerseygirl on November 24th, 2012, 12:43 pm

Had my emg on June 5th, felt great for awhile after it and then, like you started doubting it. Lots of doubts. . . now, several days earlier, contined bad burning cramps in my legs makes me doubt again. I wish for you that you can avoid this path. Lots of wasted hours, days, months and now a year for me with no hope in sight.
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Re: Doubting the EMG

Postby Kamila on November 25th, 2012, 2:46 pm

Hi Yulia!
Yes, welcome in club.
Me also was get very quickly tired with exercises in school.I thought its something with heart but EKG was good.My pulse always was so qucikly and i was tired.But then its seems like You- hypermobility is reasons.
Lol i always thougt be flexy is good and sign of good health :D now i know its oposite and its make problems.
About cysts - in my country they dont surgery it. Only in one clinic in all country. In others they think Tarlov cysts on spine is nothing to do surgery.But other kind of cyst (like in breasts )they said its good to delete-one point for them :D.
In hospital they ddint found nothing more and they gave diagnosis- BFS.
(I also have protrusion on Th9-10 which push spinal cord- but its not sholud make fasciculations in all body).
You know it was alo one more "funny" situation in hospital-when one important doctor come to see and she just stand 2 min while i lay on bed and she said she dont see my fasciculations in foot in that moment- when in fact i felt them. Then i took camera in my mobile phone make zoom and prepare 5 movies- with my foots fasciculations.
When she come on next day she saw it lol.
Now i am again in stress because of this torrible pain in hands and foot- today i cuold not even open bag. I was read about this pain on net and its seems like i have Carpal Tunnel Syndrome and Tarsal Tunel Syndrome.
I read EMG can not cause it- its made often to check if someone have Carpal Tunel Syndrom. Emg should not make it. But maybe in my case when my muscle and nerve are in hyper- reaction, Emg caused it.
I hope its explanation. I am affraid because Carpal Tunnel Syndrome is also in MS (i dont have it-RMI was good) and in ALS. I am still so affraid of ALS.

Hi Jerseygirl.
I dont know all Your story but maybe You sholud make next EMG?
Cramps often appear when dont have enought electrolytes:magnesium, calcium,Na, K. You have good level of them?
Hope all will fine soon!
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Re: Doubting the EMG

Postby Yuliasir on November 25th, 2012, 11:02 pm

as for carpal syndrome in ALS I have read that the only relation is that people with carpal syndrome are still often misinterpreted as arm onset of ALS. That is the only relation :))) ALS is a death of brain and spine notor neurons, while tunnel syndrome is a result of locl nerve pinchment/inflammation and is completely reversible (if treated soon). Of course it can not be caused by EMG, but in fact many of our fellows complain for it and hypermobility is a good chance to get tunner syndrome... It can start suddenly (my sister in law just woke up one morning with awful pain in a hand). I hope your private EMG will show if it is a carpal syndrome too.
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Re: Doubting the EMG

Postby Kamila on November 29th, 2012, 11:02 am

Hi Yulia!
Again thanks for answer. I was visit my neuro yesterday and he gave me strong anti pain pills and again some pills for relax muscle. Its sounds its strange thing with my pain now.He said we will wait 3 weeks if pain will gone or not.
Thanks for info tha Carpal Sindrome is not really realted to ALS.
When you said "of course it can not be caused by EMG, but in fact many of our fellows complain for it and hypermobility is a good chance to get tunner syndrome" you mean many people with hypermobility complain after EMG- they got Carpal? Soory its my english problem.
I am affraid because its in both hands and both foots.Its not normal heh.
Now new thing. Its start yesterday at night. Sudennly big pain in left part of face-like from broken tooth-but in all left part of face. It was like for 5 minuthes then gone, after 15 min its start again and gone. In day now i also have few pain attack. So i tryied now find info on net- and i see its typically symptoms of TN-trigeminal neuralgia and again info that its caused often by MS or ALS.
I dont understand whats going on. If i read first that TN can occur in MS or ALS and then got this simptoms i would think something is wrong with my head. And its only my imagination. But in fact i was not open net for 2-3 days. And in last night come this pain in my face.
About EMG doctor said of course he will make it and its good idea- i just want wait some time and go for EMG if pain in hands and foots will not so big.
How are You Yulia?How is Your health?
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Re: Doubting the EMG

Postby Kamila on November 29th, 2012, 11:19 am

I forgot mention (also to my neuro) that always when i try scratch place on hand between elbow and palm- i got like elecrical shock in fingers even, now also when i try scratch my palm i also get this fellings.
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Re: Doubting the EMG

Postby Yuliasir on November 29th, 2012, 12:16 pm

Well, I personally did not had that TN pains but in fact trigeminal neuralgia happens quite often wothout any bloody things like MS or ALS, it is just separate neurological condition.
looks like you really have a kind of at least sensory neuropathy or inflammatory process. Which on my point of view is not so bad because if it is inflammation, it can be cured. However it is a hell of pain and I have a lot of sympathy to you.

regarding what I said (do not worry, I am Russian by language and also may express my thoughts not perfectly in English) - I meant that people with BFS often start to have hypermobillity symptomes (for example, their joints become cracking so much), and hypermobile joints are very prone to carpal syndrome just because that extra mobility. it is not related to EMG, just to the fact that tunnel syndromes or something like that are common on our BFS community.

However I never heard about tunnel syndrome on both hands and legs at once... listen to your neuro, but for me it looks like you have a kind of inflammatory process (shocking pains, TN, etc.) which could be started by stress and by any other agent. I can tell you that also never heard or read about any neurodegenrative processes also starting everywhere at once. Even MS also has preferred zones and I never heard that it strikes all the body at once. All people with MS whom I know from their blogs also had very limited impairments - two had typical ocular onset, one girl had sudden legs paralysis (temporary) and vocal cords palsy (also temporary, she is a singer and sings up to now - more than 6 years in MS diagnosis).
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Re: Doubting the EMG

Postby Kamila on December 1st, 2012, 1:48 pm

Hello Yulia!
Thanks again for answer!
Now when i read Your last post i see that really BFS is big complex of symptoms-not only fasciculations.
ABut my pain its still the same in hands and foots-i read now abourt sensory neuropathy after Your thoughts and i think the same now-its can be neuropathy.
About TN.Today i felt terrible pain in one of my teeth. When i touch place under this teeth- near nose i fell here is some cyst and its pain like hell. I think again will have endodontic procedure- i had last 6 month ago. I dont know why again its comes and why so quickly and sudenlly its make cyst. So i guess TN comes because of this.It will be 6 times in my life when i have endodontic. Outside teeths looks good, healthly and from root they damage. I fell really tired of pain today and i think i am depressed.And must wait till Monday to visit my dentist.
I start fell like 100 years old lady.
If its some inflammatory process- i think reasons can be only stress. dont know what else. Anyway i want make Lyme test- because they didnt make it in hospital- they said i have good level eozynofiles in blood so i dont have any ilnees from animal or insects. Generally all my blood is goods.Only last3-2 years OB is little too big BSR (around 17) in Poland its norm till 10.But CRP was good level last time.
Today i was scared again- because example when i bend center finger- that he touch place where he rise then its shakeing in big clonus-its shakeing like crazy. I always had hypermobility joints but never in past had this kind of shakeing.So i start think"fascicultions + shakeing+ other things =well its maybe ALS"
But i read Your posts again and again- to make myself calm-that its part of BFS. In past i thought BFS is just fasciculations.
I guess stress will eat me.I try relax.
Again thanks for all answers!
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Re: Doubting the EMG

Postby Yuliasir on December 2nd, 2012, 2:32 am

oh my darling BFS is not only fascics... it invoilves fatigue, pains in the musckes, stiffness, perceived weakness, night shakes (when waking up abruptly) and restelss leg syndrone, sleep issues, neurogastral syndrome (GERD, swallowing troubles, pains in esophagus, etc. often taken for bulbar paralysis onset). I once was so nervous this summer (my daughter had to pass important medical testing) that for two days all and evey fingers on my both hands were chaking if I exert them a bit... I have intermitent pains, a bit of spasmophilia (maybe due to low Ca)...God knows what else might come in but the same happens with fellow twitchers so we do not die definitely. Good to see yout TN might have a well known reason (it is much often related to dental issues, inflammation or stress than to any drastic diseases). Sympathise to you because dental sygrery is not a pleasent procedure anywhere...


Please also remember that as you are hypermobile (like me), we are much prone to anxiety and stress and to various psychsomatic conditions. I do not know why it is so but looks like it is clearly proven by statisics :)))
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Re: Doubting the EMG

Postby Kamila on December 4th, 2012, 10:02 am

Hi Yulia!
Thanks for answer and for Your angelic patience with explain me still and still to not worry and thats its only BFS.
Good that i read Your post now because from yesterday i again fell scared because i fell very heavy my right forearm. Its like someone put there 1 kg of something.I can of course raise my forearm but fells heavy.
You told that people with BFS can have weakness and even some bulbar paralysis.
TOmorrow i go to my neuro to make EMG of hands-will let know results.I wanted wait longer time before make EMG i wanted wait when pain will gone but I lost patience.
Soory to hear about daughter-hope she is fine and test was good?
About dentist i will have endodontist healing. Now take antibiotics to reduce inflammation.
Hypermobility sucks ;-).
Hugs
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Re: Doubting the EMG

Postby Yuliasir on December 4th, 2012, 10:20 am

Hi Kamila,
yes I suppose my daughter is fine (she is far away from home now), but being at the age 16 she started to have severe ocular migraines, etc. but tests were ok generally and we all hope it was just severe stress (she is prone to various stress somatizations). She seems not to have them anymore.

People with BFS usually do not have bulbar paralysis, but we have neurogastral syndrome and GERD wich mimics it a bit - we have hypersalivation taking it for bad swallowing management, we have lump in the throat and think it is troubles swallowing (same for pains/spasms in the esophagus), etc. Stress causes slurred speech, but far not so slurred as in paralysis, stress causes husky voice (but not such specific vocal changes associated with dying vocal cords), etc.

heavy feeling in the hand are quite possible in our cases.

Maybe it would be useful to you to read last post of BFSBurger who has all types of strong persistent cramps, pains, extreme fatigue and finally was diagnosed by his neuromuscular doctor as mild case of Fibromyalgia (while he was sure he has one of really deadly diseases) just to see that symptomes might be really severe... while still not associated with something threatening our lives.

wish you good relief after meeting with neuro.

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Re: Doubting the EMG

Postby Kamila on December 5th, 2012, 7:36 am

Hi Yulia!
Good to hear Your daughter have no pain anymore.I also hope it was caused just by stress.
I will try find post BFSBurger.
TOday i type only short post as in nervous about EMG today.
Also find something which confused me. Always heard that in ALS fasciculations comes after muscle weakness not before.
Now on some page about EMG find totally different info.
Here is link-post called "CTS testing"
http://www.teleemg.com/guides-info/pati ... -symptoms/
" 3) Is it likely that twitching can occur for six months without loss of strength and still get diagnosed with ALS???
(..) yes it is possible, and that is why a follow up EMG is usually needed. Regarding time period after onset of twitching without weakness or an abnormal EMG, it is difficult to be absolutely precise in time. But several months are usually acceptable by the time fasciculation is seen, but provided no other clinical/EMG findings."
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Re: Doubting the EMG

Postby Kamila on December 17th, 2012, 6:28 pm

Hi Yulia!
I trying send You message but its still in my "outbox" not in "send" so i dont know if You get them.
Anyways i put topic in "general topics"-its about Cipro.
Hope You fell good nowadays.
Regards!
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Re: Doubting the EMG

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