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malena

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Hello, I registered months ago but I never posted anything. It seemed to me that it would be like recognising that the illness was there.
I ll explain and see if somebody can share the experience.

My husband, 48, started having fasciculations in November 07, he saw a neurologist and then in April 08, after a series of test, told me about the whole thing.

Acording to the doctor the EMG was abnormal, I can t remeber about the nerve conduction test. He as diagnosed with MND in the initial stage.

We went to another neurologist, in a bigger hospital, an specialist in MND. He repeated the tests, my husband says that that second time they were much more thorough. We were told again that the EMG was not clean but they could not be sure it was ALS.
They have done the other usual tests, except the biopsy.
Nothing has changed since then.
Once thing that bothers me is that at night he has this constant jerks. The doctor said they were not important. Anybody has had a similar experience?

I just want to add that we live in Belgium, in Europe.
Thanks to everybody.
 

Al

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Hi Malana. I am sorry your husband is having problems but there are people here that can help with support and advice. The doctors have a tough time diagnosing ALS. There is no one test to tell if you have it. Fasiculations can be caused by a number of conditions. Does he have any weakness? The jerks at night, are they in the legs or elsewhere?

AL.
 

malena

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Thank you Al,
He does not have weakness or atrophy, that s why the doctor say he cannot diagnose ALS. Overhere they seem to use the term MND in a general way for a series of neurological conditions. I forgot to say that there were only problems in the lower neuron system, not the upper.
The fasciculations are concentrated in the legs, although they started in a rather violent way in the upper part of the body. He thougt it was tachicardia before realising that it was muscular. The jerks at night seem to be only in the legs.

There are some things that I don t understand an I get contradictory answers. When I asked the doctor about what could be causing the fascisulations he mentioned a virus, but then he added that in that case they should be going away after a while.

I am trying to understand what does it mean the fact that the EMG was not all right. Why is it abnormal? The first doctor we saw said that anybody whith fasciculations would show it in the EMG. But reading what people write here, this is not true.
And he said that "bening" only meant that there was no evolution.

Thanks to everybody that has contributed to the forum. It s a great help, among other thing, for understanding what are the questions you have to ask.
 

BethU

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Hi, Malena ... I'm so sorry for what you and your husband are going through. Hope you get some good answers soon.

I can't give a medically sophisticated response about the EMG, but I do know that it is possible for an EMG to be "abnormal" because of many, many different conditions. An EMG does not diagnose MND ... it merely shows if certain anomolies are present that might indicate MND.

For instance, an EMG of a patient with Myasthenia Gravis could be identical to an EMG of a patient with MND, and a doctor could not tell them apart just from looking at the test results. He/She would have to do other tests to eliminate one or the other.

If you could get a copy of the doctor's written report, it would explain each "stick" they did, with an evaluation of its meaning. In the US, all medical records legally belong to the patient not the doctor, so there is no problem getting copies of records, but it may not be the same in other countries.

I'd ask the doctor who performed the EMG for a copy of the report. And also ... does he think your husband needs further tests, and if so, what ones? Do you have follow-up appointments made?

See if you can get a clear explanation from the doctor about exactly what he found, and what he thinks it means.

Good luck!
BethU
 

malena

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Thanks for your answer

Thank you for you reply, Bethu. It helps a lot to have somebody trying to give an answer, somebody who understands what your are going through. My husband does not want to talk about it which I respect.
I am not sure who is legally the owner of medical records, I don t think it would be impossible to get them anyway. I am not sure I would be be able to understand them.
We have another appointment in a few weekw, last one was beginning of July. I don t think the doctor intents to perform any more test. My impression is that they think is a question of waiting to see how things evolve. The first doctor said it could be one to ten years and I didnt dare to ask, in front of my husband, what exactly he meant .
Many thanks again.
 

happy

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He does not have weakness or atrophy,

With an abnormal emg, my understanding is that at that point, there would definetly be weakness if it were als. That is what both my neuro's said. Be encouraged.
 

crystalkk

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Malena,
I am sorry for what you and your husband are going through but I do agree with the others it doesn't sound right......
Do you have the results of the emg? Can you post them if you do? If not I would request them ...
You said things haven't changed since then, he has no weakness or atrophy.
Does he have any other symptoms?
Do his muscle fatigue, ache, cramp after using them for a while?

hang in there,
 

Christina Jacobsen

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help please

Hi,
I am here in hopes of finding some reassurance. About three months ago I was diagnosed with daibetes. They said it was mild. When I went in I was midly achy in my shoulder and that increased with activity. Then tinglingling in my hands and feet started and dull ache in both my calfs. Went to a doctor at John Hopkins. He felt it was anxiety but sent in for an mri of my head and to a muskosletal specialities for my shoulder. My mri was normal My muscle doc said that I had cramps in my shoulder and tested my reflexes. THye where normal. My doc read ran several blood tests. They all came back normal. He put me on lexapro. That helped and was getting better. I did and still continue to have muscle twitches but not really weakness but do feel shaky. Then two weeks ago we went to the zoo and walked to the d.c capital. Was fine all day but the next day had back spams. Now It is spasms and the tingling and shakeness. We went on train Saturaday and spent the day at the farm. I went on a trampoline. climbed a hill with my kids, nad wne tthrough a corn maze and felt fine. However last night I wen ton a walk and experienced extreme pain along my spine and pain under my right rib cage. Last night I would up with a left hand that was asleep and a should is tender and stiff. I also have hand cramps in both hands and am shaky. I have felt a bit off balnced too. Sugars are normal. I can swallow okay but throught hurts and cough alot
.

Does this sound like Als? I can still do everything I normally do but feel weak?Also I have trouble having bowel movements. Would Als come and go like this?Would it be present in so many parts at once? I am terrified. Have two kids with a husband that is deployed alot I am scared.

Please help!
 

Al

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Hi Christina. Your symptoms don't sound like ALS. It doesn't come and go or show up all at once. Wright may be able to suggest something that it might be but I don't think you have to worry about ALS.

AL.
 

olly

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hi malena

sorry to hear about your husband,i hope they can give him a more definate diagnosed soon and something other than mnd.
i wanted to reply about the leg jerks,when i first became ill and started with the umn symptoms i had these really bad on a night.
there can be many reasons for these some neurological,they are common in ms.
but without neurological symptoms they are classed as restless leg syndrome.
alot of people get harmless sleep starts as well were there body will jump or jerk and may mistake it as myoclonus.
i sometimes get myoclonus and they can sometimes be very violent contractions,or i get a sudden twitch feeling and a arm or leg shoots out,this effects my right side of the trunk as well. this can happen at anytime even when standing my right leg has shot up causing me to fall.
i would not worry too much about the jerks,especially if there are no umn signs/symptoms.
i hope you get some definate news sooner rather than later,the waiting and wondering can sometimes be the hardest time.
take good care.
caroline:)
 
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