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fredrik

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swe
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malmoe
Hi everyone and happy new year!

i've been reading this forum now and then for 6 month and love to you all, you seem to have big hearts and thats what counts in life!
sorry if this is going to be a long story, but i'm very worried about my symptoms and would like to give as clear picture as possible.
i would really apriciate some feedback. Especially from Mr.Wright if you have time reading this.

summer 2007
starting to have some twithes in my right pointingfinger.

dec 2007
starting to feel strange tension at night in my legs.

jan 2007
little shaking in fingers and often remarkable tiredness in legmuscles.

feb 2007
my masseur told me i was little stiff in right shoulder.
went to my local doctor who told me probably stress.

mar 2007
some strange "pulsning" in legs and arms, not visible.

apr 2007
shoulders, neck and legs i a little bit smaller.
some sensations under my tounge and sometimes trouble with the letter S.
can feel some subjective weakness in legs.
also some very light cramps a little bit everywhere.
some visible twitches in fingers and big toes, both sides.
visit neuro nr1, suspects MND after clinical, after all bloodwork and EMG she says no NMD.visit shrink who sais no stress.

may 2007
some light pain in shoulders, mostly right.
backpain now and then.
visible twitches, very local, 3-10 sec, mostly legs.
some stiffness in face muscles.
visit neuro nr 2, suspects MG after clinical, new EMG also in tongue, rules out MG, probably no ALS

june 2007
more of all symptoms.
very light pain sometimes in knees and ancles.
my wife can now confirm i'm thinner around legs, arms and neck.
my right hand most thinner.
some weakness in my hands according to trainer, but still normal.
visit neuro nr 3 (als-specialist) who does clinical, MEP, LP, EMG and all bloodwork. he said no signs of ALS, but only time can definitly exclude ALS. don't worry

jul 2007
often some ache in feets, ancles, legs and hands.
trouble training, strange pain, my trainer confused.
now also sometimes small trouble with articulation.

aug 2007
very tired in shoulders when i hold a phone or eat etc.
more visible twithes.

sep 2007
most clearly is the smaller shoulders.
all symptoms a little bit worse in the right side of body but left side in face.
bloodcirculation not as usual.
also pretty often twithes in lowerlip.
neuro nr 1 calls in their neuromusculear specialist, says no neurologic desease but we should do MRI, ALS would progress faster.

okt
same symptoms but more ache, more weakness and also some trouble stretching fingers.
neuro nr 2 can't find anything to worrie about, says smaller muscles is hard to see and he will be surprized if this will end up with ALS. countinues with MRI and sends me also to reumath.

nov 2007
almost constant very local twitching, diffrent places everytime, more often my right side.
almost constant light cramps.
trying to train but keep being slowly weaker.
do the MRI, head and back.

dec 2007
same but little bit worse of every symptom.
especially weakness in back, shoulders and calfs.
neuro nr 1 gets the result of MRI, calls me and says stop thinking of ALS, i would like to see you in a year, we have done everything know, we have to wait and see.

So i'm waiting for neuro nr 2 and his opinion, they all seem to think this is no big deal.
Most of my symptoms has accelerated last 2-3 month.
also they found some small signs at fist EMG between right thumb and pointingfinger in april, some sign of desease in my spinal liquid in june, some degenerative changes in spine and changes in frontallobe in november in the MRI.
I trust my neuros but i've read about many people who gone throug similar pattern and then after 2-3 year gets the diagnose.
Also i'm getting slowly worse (smaller muscles, weaker, more twitching and ache) and they have tested me for everything! to me it sounds like classic ALS, when nothing is found and symptoms getting worse, eventually you end up with ALS.

My concerns is mostly if i went to soon to neuros and thats why they couldn't find enough signs to suspect ALS?
Or is my symptom still not gone that long so they could be turned in to objective signs for neuros, and thats why they tell me don't worry?
Or maybe they after excluding everything else now suspects ALS but wait for progression before informing me about this is probably ALS?


Thank you all for feedback and your own experience with diagnose and symptoms!

Fredrik
 

Kiera's dad

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Hi Fredrik and happy New Year.

Your symptoms seem very unusual and I'm not surprised the neuros refuse to commit themselves. The most significant features are the EMG results and also the relatively slow progression. These suggest that ALS is not present. There are so many possible neurological conditions that you are unlikely to receive a formal diagnosis without more conclusive clinical signs. Also, I understand it would be very unusual for ALS to present with such widespread symptoms.

The trouble is that its easy to notice everything your body does when you are nervous about your condition, even though tiredness, cramps, weakness etc are experienced by all people at sometime. Listen to your neuro, be thankful that your condition has not substantially changed since 2007 and try to get on with your life as normally as possible. I hope everything works out OK for you.
 

CindyM

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Hello Fredrik. It is so nice to meet you. There are not many of us around in this particular boat. I've had serious symptoms for over 2 years now, but they still cannot pin down exactly which neuromuscular disease I have. I read and researched until my eyes watered but of course I can't figure it out any better than the doctors, LOL.

Thank goodness I seem to have an adaptable nature. I've gotten used to my symptoms and took up less physically active hobbies.

One bit of advice that one of my doctors gave me seems to be on target. He said if it takes a long time to nail down a DX, it is more likely that your condition will be "benign", meaning non-life threatening. It took me awhile to trust this advice, especially since he was the first to suspect ALS. It sounded like he was contradicting himself, but now I think his second idea is more correct.

Anyway- keep your head up. You could easily be one of us lucky ones that ends up dodging this bullet. :smile:
 

nightwolf_mk

Distinguished member
Joined
Aug 1, 2007
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Diagnosis
05/2012
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BR
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SP
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Gru
Hello Fredrik, nice to meet you. I have most of your symptoms for two years now and the doctors couldn't figure out what is happening to me. I was very scared with all these strange things, but I learned how to live with this. A friend of mine said once that I don't know what it is and if this is benign or not there is no much to do so it's better try adapt myself with all of these thing. I know that is not easy, but today I can say that is possible. There are some things that relief these things and I will tell you because maybe it will help you too. I drink tonic water every day now, it helps to relief the "cramps". I take chelated magnesium pills in a daily basis too and it helps to relief the twitches and some weeks ago I started a medicine called gabapentin. My current diagnosis is benign fasciculation syndhrome or cramp fasciculation syndhrome and there are some recent studies about the relief of symptoms using gabapentin for these conditions. The doctor told me to try and I can say that is the best thing that I took since all of this have started. I took small doses of it daily and my symptoms almost disappeared since I have started this medicine. I don't know exactly what my condition is but at least this medicine is helping me. Maybe it could help you. Talk to your doctor about this.
Happy new year and I hope you could get better. I'm sorry about my poor english because is not my native language and I'm still learning it.
God stay with you.
 

Phil M

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Is lyme disease common in your area?
 

Zaphoon

Extremely helpful member
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A very comforting thought for me was when the doctors shared that a clean EMG meant that none of the symptoms I had been experiencing at that time were due to lower motor nueron involvement which translated into NO ALS! That was a very happy thought!

Zaphoon
 

fredrik

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swe
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sweden
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tanks for your opinions.

nightwolf, my english is also poor, i'm from sweden.
i had gapapentin jun-aug 2008. didn't help at all.
the twithes is not the problem in my daily life, it's moore the weakness and the cramps.

Phil, lyme is not common, and i've been tested for that also. they pretty much tested me for everrything, borrelia, MS etc, even my DNA for PSMA.

So i'm pretty much stuck with slowly progression of weakness and atrophy spread all over my body. By the way, i'm 35 years old.

Cindy, i agree with you, i am greatful for everyday now. and also i've been blessed with a moore humble attitude in life. i'm free from skiing and golf now and maybe should find other hobbies:-

take care and i hope i'll get to know you all better here.
 

wright

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Hello Fredrik

The advice given to you by Keira's Dad and Kim (Zaphoon) was very good. Many of your symptoms are "lower motor neuron" symptoms (twitches and muscle atrophy) but you have had a clean EMG on two occasions. If those EMG's were done properly and thoroughly, then your symptoms are not due to denervation or reinnervation.

You also asked if you could have had the EMG's done too early: given your symptoms, the answer is no. EMG's are very sensitive and will pick-up pathological conditions before you realize you have them.

To reiterate what Keira's Dad said: the onset of your symptoms on such a global scale points away from ALS.

You say you have muscle atrophy: do you think it could be due to you not working-out as hard?

You also say you have been referred to a rheumatologist: have you seen him/her yet? Given your symptoms, that is definitely the next move that will hopefully shed some light on what you have. In the meantime, do your best to relax and not worry about ALS because there is no evidence at all you have it.
 

Phil M

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Phil, lyme is not common, and i've been tested for that also. they pretty much tested me for everrything, borrelia, MS etc, even my DNA for PSMA.

You can't rely on the test for Lyme. They are very inaccurate. Its not supposed to be common where I live, but people here do get it.
I know the waiting game is horrible. Just try to keep your mind busy.
 

fredrik

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Apr 29, 2008
Messages
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Learn about ALS
Country
swe
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sweden
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malmoe
hi wright,

well in sweden the clinical is done by one neuro and the emg by another.
i did all 4 emg's may-june 2008. 3 of the emg's were done by 2 of the best in sweden. i don't now how thoroughly they were done but reading your answer they should have found sign already then.
the clinical, bloodwork etc in june were done by the best als-specialist in sweden, probably one of the best i europe.

haven't been to the rheumatologist yet.

the musclewaste is not of not using my muscles, i'm trying to workout and be active but most of the time i get strange ache, and no new muscles.

i supose it's not ALS, but still, most of the symptoms where more obvius after all the testing april-june 2008 and i keep progressing, allthough it's slowly.

thanks again

fredrik
 

fredrik

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Messages
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swe
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Important Correction!

i saw my first text.
ofcause it's all the month of 2008!
exept the first 2 notes.

Fredrik
 
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