Cramp twitching denervation

[link1030]

Hello to all!
I am a 31 year old man living in Belgium with a lot of digestive surgery history (accidental section of the vagus nerve).

I have started to develop symptoms that make me think of sla.
I have had fasciculations all over my body for almost a month and a half without interruption (not a minute without fasciculations) as well as cramps in my ankle followed by fasciculations at the place where I felt the cramp.
It got worse when one night I felt a fibration in my little fingers. After this vibration I immediately noticed a loss of dexterity in my left fingers. The next day I felt a loss of nerve impulses in my right hand, in my wrist and also in my little finger. The dexterity of my hand was not the same. However after 1 week my right hand was better but the mobility of my wrist was not the same at all. When I shave in the shower, I have difficulty rotating my hand, which was possible before.

I consulted a neurologist who visualized my fasciculations on my left foot and prescribed an MRI of the head which did not give anything as well as a medullary MRI that I still have to undergo on December 26. In the meantime I was able to have an emg yesterday and she looked at my lower limbs and on my left leg she had a doubt about a denervation before rectifying that there was nothing and that she says that it is not a sla because no fibrilation on the fasciculations. She then did my left arm because I complained of having a loss of dexterity on my little finger and she noticed a dernervation and told me that I shouldn't worry and that she would do the upper limbs at the next session. She said that it could come from my cervical problems and prescribed a cervical scan. To reassure me she said she would refer me to a sla teacher so that I could be reassured. I am not reassured at all because many symptoms make me think of the disease.
The first symptom was a big cramp for no reason followed by fasciculations at the place of the cramp (left foot) as well as diffuse fasciculations all over the body.
-Temporary loss of dexterity in my right hand (I had trouble brushing my teeth and holding my toothbrush and razor properly).

Enormous pain at the thenar eminance of the 2 hands as well as fasculations on these thenars.
The clinical examination is normal
I still have strength in my limbs to hold water bottles.

My question is:
Is a denervation automatically synonymous with Sla? The report of the neurologist is not clear. The lower limbs have no problem despite the cramps and fasciculations but she noticed a denervation where I felt a loss of dexterity I can still move this little finger but the movement is not fluid as before.


thank you to all

 

[affected]

No, as the doctor has told you there is nothing happening that would suggest ALS (I think that is what you mean, not Sla?)
You should really keep discussing and working with your doctor, you will never find a good answer online as you will keep searching until you scare yourself into being sure you are dying.

Please read the post titled READ BEFORE POSTING to help explain the reasons why your doctors have not found evidence.

All the best, keep working with your doctor.

 

[link1030]

Thank you for your answer yes I meant als. Sla is in French. Thank you for your feedback I know that no one will be able to diagnose me with the disease here and my heart goes out to all the people who struggle with this disease every day. I just wanted to know if there have been similar experiences.

 

[link1030]

Good evening to all.
I would like to apologize in advance for my message and I thank all the members of this group and bring my support and love.
Since my last message I have some new symptoms that have appeared and that worry me.

-When I go down the stairs I have a tremor in my legs or if I go down a slope too. I have no problem going up the stairs.
My fasciculations have increased in both my thenar and hypothenar eminences of the right and left hand.
But what worries me the most is that my left thenar muscle is getting tired very fast followed by fasciculations where I feel a lot of tension.
If I take a stick and squeeze it I feel tension directly followed by fasciculations.

I also have a tremor during certain movements like bending forward while standing at 90°.

So I wanted to know if the tremors of certain muscles precede the muscle weakness?
The symptom that worries me the most is the tension in my thenar eminance/pain followed by fasciculations if I use the muscle too much.

I have several tests to go through at the end of this month (upper limb emg, cervical scan, motor evoked potential) the last neurologist said he would send me to an ALS professor I'm not sure what to think. She didn't notice anything in my lower limbs but saw a denervation potential in my left arm where I have the most problems.


Again I want to apologize for my message about limbs but I feel more like myself since the first symptoms appeared. I isolate myself, my family is anxious and I try to keep it to myself. I don't know what to do anymore. The symptoms clearly prevent me from living normally. I can clearly not use my left hand anymore without feeling the pain and fasciculations directly.
I send you my strength and love for all the members who fight every day.

 

[ShiftKicker]

Hello-

I understand how difficult it might be to have to wait to get answers. It sounds like you are under the care of medical professionals who are working through your symptoms and conducting the correct tests in order to create a picture of what might be wrong. While it might seem logical for you to search online and ask strangers for feedback, this is not a terribly helpful way to reduce anxiety- anything is speculation at this point and may actually be harmful in the long run if it diverts focus from what may actually be wrong. While it is a struggle, you must wait til you get your test results and consult with a doctor.

If you are struggling with normal activities of daily living due to either anxiety and/or physical symptoms, you must consult with a doctor to help you and reduce the burden of suffering. We can only really provide the most basic of information here for those who are searching for diagnosis- the main focus of the forum is to provide practical tools, information and support specific to the problems that arise from an ALS diagnosis.

Please take care.

 

[affected]

Please read the post I directed you to again.
I'm sorry to hear you have more things of concern.
You need to take them to your doctor as they can perform a clinical examination of you and discuss the meaning of anything new in light of those findings.
All the very best.

 

[lgelb]

Tension and fasciculations after squeezing a stick, as well as tremors during certain movements and pain when using one hand, all speak more to a muscle problem and possibly systemic condition like weakness after a virus, than a problem of the motor neurons like ALS is. I don't think you have anything to worry about in that regard.

It sounds like you have further testing coming up soon; please don't post again until you have results, as it will only feed your anxiety. You may want to speak with a counselor meanwhile to get some outside perspective on your fears.

 

[link1030]

Thank you again Igelb, Affected, ShiftKicker for taking the trouble to answer me. I apologize again for sharing my fears about my new symptoms (shaking legs when going down stairs and walking recently)
I will come back to you after I have all my results and a definitive diagnosis. Have a good evening and thank you for your answers.

 

[link1030]

Hello to all,
This week I had an evoked motor potential. The woman was very nice but she couldn't tell me what she saw during the exam because she wasn't allowed to. She just told me not to go on the internet. I was able to speed up my appointment with the neurologist for December 30th. My medullary irm is scheduled for December 26th and my cervical scan on the 27th. After that I think I would have done everything.
Concerning my new symptoms, I sometimes have feet and hands that sweat a lot for no reason, I read that it could be linked to damage to the central nervous system. I never had that before the symptoms started.
I've never had this before. It worries me of course but I can't do anything about it and wait for the diagnosis. I wish you a good day as you struggle every day. I love you all. I just wanted to give some news. I will be fixed for the month of January. Take care

 

[affected]

What happened to only coming back when you have all your results and a diagnosis? (rhetorical)
Always discuss new concerns with your doctor. You are not taking the advice given of not going on the internet, even though you take the time to tell us you were told this.
Please leave it now until you have a diagnosis, we can't help further and wish you the best.

 

[KimT]

That's good they were able to schedule everything this month. My hope is that it is something they can treat and/or cure.

Take care and best wishes for 2023.

 

[link1030]

Hello, I'm back to give my news as planned. My motor potential is reassuring. The neurologist gave me a lot of exams to do to know where my cramps and fasciculations come from because it is rare according to the doctor (she gave me a pet scan for a neoplastic disease and blood tests for autoimmune diseases). She told me to do an emg again in a few months because it is in the protocol to see if there is any denervation that will appear later.
Concerning my symptoms, my neuropathic pain continues and goes from point A to point B.
Last week I woke up with terrible pain in my throat and esophagus. I had a painful dysphagia which disappeared the next day. my throat has a lot of oppression that comes and goes and I have burning pain in my back and esophagus. Once again I have the feeling that something is going through my body and giving me pain. I still have fasciculations and some pain in the thenar extremities but it is intermittent. Sorry for my English

I will come back to report after March and see if I have other symptoms that will appear or not.

For the moment the most reassuring thing is that despite the pain in the muscles, the joints, the oppression and the esophagus pain, I have no clinical weakness yet but I am only 2 months since the beginning of my symptoms.
All my MRI and blood tests are normal.
Thank you to you I love you who struggle every day.

 

[link1030]

Today I feel so bad.
I have excruciating pain in my upper back when I swallow. The dysphagia seems to be in the lower esophagus, could it be the bulbar beginning? I regret not having done the upper extremity emg. A big oppression in the throat which goes up to my palate. And the back pain is after each swallow. I have no weakness except for the pain. So lost I am fed up. The doctor said that I have a neurogenic syndrome without denervation but that I will have to do an emg every 3 to 6 months.
I wish you a happy new year 2023.
Take care friends❤️

 

[Nikki J]

No it doesn’t sound like bulbar. To me it sounds like a gi problem. See your gp they might order a gi test or give a gi referral

 

[affected]

We cannot help further. You have been asked to stop posting. Please go tell all this to your doctor each time.
All the best, but being here is no long the least bit appropriate nor helpful for you.