Please help me!

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Estelacarreiro

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Hello everyone
im a 34 year old mom living in Mexico City and desperate because I don’t receive any diagnosis

My symptoms began in June, after a respiratory illness that lasted one week. Then the next week had articular pain for one more week and then recovery

In august I started having fasciculations all over my body (I still have them now) and fatigue but no weakness

in September went to neurologyst that requested RM,with normal results, blood tests normal and EMG with abnormal results:

+ Electromyography by insertion of needle monopolar electrode in the aforementioned muscles, observing in all the insertional activity of normal amplitude and duration. At rest, discrete fasciculation potential amounts are observed, except in deltoids and in the extensor. In the partial contraction, the activation of discrete amounts of Action Potential of the High-Voltage Motor Unit is observed, all of normal duration and with a discrete increase in the number of spins. Only in the tibial some polyphasic PAUMs are observed. The maximum contraction is obtained in most of the full interference pattern muscles with recruitment and triggering frequency in the normal motor units. In the gastrocnemius the pattern is simply incomplete due to a light decrease in the recruitment with a compensating increase in the triggering frequency of the residual units.

Abnormal Neurophysiological Study due to the presence of the aforementioned alterations, which indicate:

a) Discrete left peroneal mononeuropathy characterized by axonal degeneration (non-localizing)

b) The EMG shows a very discrete neuropathic pattern with signs of chronic denervation, reinnervation and slight loss of motor units which are more evident in the distal muscles of the four extremities with predomination of the lower ones. There are also observed discrete amounts of active denervation in the form of fasciculations with predominance in the distal muscles.

From the neurophysiological point of view, these findings seem to correspond to a sequel status of a self-limited polyneuropathic process, specially some form frustrates an acute demyelinating polyradiculoneuropathy without discarding the contribution of the benign fasciculations syndrome with a high level of anxiety manifestation. It is suggested to establish a very close correlation of these results with the clinic, as well as perform control studies in accordance with the progress and clinical criterion.

With all these info went back to visit my doctor and
He said It was not MND but we have to wait four months and then make a muscular biopsy, but only if I don’t recover.
Then I began to feel weakness in my left hand, arm, and feet.

In november, went to Houston Methodist clinic of Stanley Appel, (with other physician of the team) and get a new neurological test (normal) and a new EMG, only for the left side of my body ( with “normal results”:

Conclusion:
There is electrophysiologic evidence for:
1. Mild left median neuropathy at the wrist, carpal tunnel syndrome.
2. Moderate left ulnar neuropathy at the wrist.
There is no electrophysiologic evidence for a diffuse active or chronic
motor neuronopathy or motor neuropathy.

blood tests normal, just lymphocytopenia

doctor said it was not MND and I could go back to normal life and even have a second child.


December
Now I feel my both legs weak, both hands and also started to feel my mouth With abnormal sensation. It is like all of those have anestesia. I have a lot of fasciculations all over my body, including lips, eyes, arms, legs, back, neck,
also have rare sensations like tingling, and sometimes I don’t feel fingertips.

sometimes I Feel like I don’t know where are my hands and feets located in the space.

Also sometimes my eyes hurt when I look up or move them, sometimes I feel my bladder Is weak too (have to wait more time to empty it) and sometimes I feel I have cardiac problems too, such as orthostatic hypotension, that is much worse in the morning.

my symptoms are not continuous, one day I feel my legs weak in the morning and then I Feel them normal in the evening.

The worst thing is that my family thinks im
Crazy or lying about my symptoms. I am really disappointed by the results of my visit in Houston. How can you get an abnormal emg in September, and one totally normal in October. Without fasciculations or nothing. It is possible to have both carpal tunnel syndrome and ulnar neuropathy at the wrist? Without pain? it could be als? If not why they don’t give me some medical treatment?
Please help me!! I’m desperate!! Kind regards to everyone here! Thank you for helping us reading our posts and giving some feedback!🙏🏻
 

KimT

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You don't have ALS.

My suggestion would be to go back to your GP and have her/him address all your questions. Your GP will direct you to the specialists for each issue or treat the issue.
 

affected

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As Kim says, not even a hint of ALS in your description or EMG. All the best working with your doctors.
 

lgelb

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You've had two (not contradictory) EMGs from one of the best groups around that show no serious issues.These results show that like many people you might benefit with less strain and some specific exercises for your wrists; your GP can suggest exercises or a physical therapist who can help you. You have nothing to worry about.

Best,
Laurie
 

Estelacarreiro

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You don't have ALS.

My suggestion would be to go back to your GP and have her/him address all your questions. Your GP will direct you to the specialists for each issue or treat the issue.
Thank you very much for your reply! Wish you the best!

As Kim says, not even a hint of ALS in your description or EMG. All the best working with your doctors.
Thank you very much for your reply! I appreciate very much your time to answer me

I have been reading more here in the forum.

After my first neurological exam, my first doctor told me it could be MND. This doctor was specialist of MS, not neuromuscular. He asked for RMI and EMG

my first EMG was not clean. It was done here in Mexico City in September, and showed denervation and reinervation in my left leg.

Then I feel the weakness, first in my left hand, then left feet.

As I was seeing a progression of symptoms, I decided to visit a neuromuscular expert in Houston.

In November I went to Houston to my second emg. for my surprise, It was normal, except for the carpal and ulnar syndrome in my left hand.

Now I feel the same weakness in my right hand, feet and now in my mouth, like my lips are sleepy or something. The weakness spreads.

I don’t know what to think.
The hardest part for me is to understand the meaning of the “no MND evidence” in my last EMG.

I think maybe they wrote “carpal and ulnar tunnel syndrome” so my local neurologist could use it as a evidence of a second part of my body affected or something like that. I think they don’t want to make the diagnosis until it is pretty clear and obvious.

I feel weakness in all of my body, in my tongue, in my eyes when I close them, in my mouth when I smile, in my hands, they are like with anestesia. But I can still move all of my body

Sometimes I feel my arms and my legs as Moving a death weight.
this is hard to explain. and also, the fact that weakness dont feel constant all the day.
but the next day, the weakness is here again.

thank you very very much for Your time reading my post and answering my questions. I hope someone find a cure for this disease soon, this disease should not exist. Kind regards
 

Estelacarreiro

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Thank you very much for your answers! They are really helpful for me since I’m really stressed thinking of this illness. Wish you all the best!
 

Estelacarreiro

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hello again everybody and sorry for writing again, I’m really worried, I’m adding here the results of my 1 and 2 EMG.

Which doctor is true?

1 emg done in September, in both arms and legs, dirty

2 emg done in November “clean” done in left arm and leg (weak side of my body)

if someone could take a look and give me some feedback I will appreciate it very much

god bless you all
 

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KarenNWendyn

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They do not show ALS.
An EMG can show abnormalities for many other reasons besides ALS. “Dirty” is not an official medical term. That sometimes is used to mean the EMG wasn’t 100% normal. But again, those abnormalities have absolutely nothing to do with ALS in your case.
 

Estelacarreiro

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They do not show ALS.
An EMG can show abnormalities for many other reasons besides ALS. “Dirty” is not an official medical term. That sometimes is used to mean the EMG wasn’t 100% normal. But again, those abnormalities have absolutely nothing to do with ALS in your case.
Thank you very very much for your quick response, I appreciate it very very much. God bless you all in this forum, I wish the best for all of you
 
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