Worried, and the waiting is killing me.

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Mobz84

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Oct 15, 2021
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Learn about ALS
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00/0000
Country
NO
City
Oslo
37 year old male.
English is not my native language so appologies if its not perfect. And also thank you all for everything you do in this site.

I started in mid last year to feel very strange, i cannot really explain it, but it was something wrong with my left side of my body.

Junping to Januar, i started to feel dizziness, for example when i took a shower and my left leg moved a little (the floor gives a little when moving) i could feel the dizziness more.
Went to gp checked blood etc.
Got to pt for neck but didnt help.

Februar,dizzy continue to get worse, and i could feel it all the time. Went to Neurolog, noticed i limp a little on my left leg, but note was probably from overweight.
Mars dizziness Just getting worse, and i now can barely function, still there all the time, i tell my gp it feels maybe a little worse when i lay on my left side, goes to ENT diagnose bppv, But that diagnose didnt feel right for me and i even asked him if it could be aggrevated by moving my left leg (cause by this time i was pretty sure it was my left leg causing it).
He Said No, But he was sure it was bppv.
I chased and went to a dizzy Special clinic for 14 times (april-still continue going) , did all excercises and so on but No improvement.

April.
Cannot work anymore bc of the dizziness and cannot find any position laying/standing/sitting. My body feels like its rocking back and forth. And Fatigue by this point is strong when i force myself going for walks etc. And i now notice i feel my left leg feels week, i talk to my gp about it we agree it can be because its my "balance" leg.

July.
Start feeling something similar to restless leg in my left calf. By this point i had told myself not to Google anything more.

August.
I lost 13kg in 4 months (9kg muscles according to my scale) and during all this time i did eat pretty normal, and since April bc of the dizziness i was on Xanax nothing else helped, and i couldnt sleep or anything bc the dizziness. So my body was not stressed because of the Xanax.

Ive had 4 Neuro appointments, she couldnt see anything in clinical but sent for an emg, this was in July.
They could see my "restless" calf and report said: No strong suspiscion of Mnd. Diagnosis: Bfs.

Had another EMG done 3 weeks ago in another clinic, as per now fasciculations had spread affecting mostly my left leg in same spots, But also right leg and my stomach and back.
Could see the fasciculations and some chronic old injuries in my left leg. No active processes. Checked left and right leg. Left arm and right hand because my left little finger has tremor. And im my back. But she raised concern about my weight loss and that iam unable to function normal. I cannot walk normal and any longer then a few 100m mostly because i get extreme Fatigue and my dizziness gets overwhelming (its like walking on a bout in high waves).
And i cannot function normal at home either, havet been able since April to do almost anything at home due to my dizziness and i also feel very weak in my left leg espscially, But also now my right leg. And as more movements i do i get very Fatigued.

I did at one time back in april by a expensive spo02 bc i tought maybe it was due to not enough oxygen or something similar caused my extreme Fatigue and dizziness. Since then i have been monitoring my oxygen, and since april til now it dropped 3% when im laying in bed. Espscially bad when i lay on my left side 92% this is before im going to sleep. In april i was always over 95. I Even wake up in night and measure and after a walk to the toilet i took a measure i was on 90%.

Went to lung specialist, nothing wrong with lungs.

Ive had mri of "everything", lumbure puncture, all blood work, ultra sound of everything that can check. Coloscopi in my ass.
I dont have any clinical weakness, but i cannot function either mainly bc of my left leg, its much more weak then my right one. And i have fasciculations all the time in both legs by now. Even my nosestrils open and close by themself. And half my skin of my head (left side) its not numb but feels like dead skin, But when i touch it the sensing is normal. And when i lift my eyebrows up there is not as manny wrinkles on that side.

I have another Neuro appt in 10 days, who is a clinical specialist.

During all this time i have been on Xanax, that never reduced any of the symptoms.
And since April my hands gets numb all the time (nothing found in ncv testing).
My dizziness has improved i can now lay down without it. But my legs are living on their own (fasc. Spasms. And feels very stiff) , and my body in general feels like its very nervous/stressed.

I have agreed to be put in psychiatric hospital to Come off the Xanax. If the clinical comes back clear. And they can also try figuring things out at the same time i really need to get my anxiety/depression under control, whatever it is.
My doctors/neurolog has no idea what is going on, and psychiatric seems to think it is bc of stress. But with all the weight loss in that short amount of time (and my body have been relaxed with xanax), and all the rest that is going on, im not confident its all in my "head".

I have followup with lung specialist in 3 months doing more testing laying down etc. Or sooner if more urgent.
I had a sleep apnea check earlier this year it was "normal".
And also followup with another EMG. In 3 months or sooner if something alarming shows up. I have "real" dizziness that shows with nystagmus and gaze testing and so on. And nothing wrong with my ears otherwise.

But im basically had No life since March, mainly because of the dizziness, anyone knows if the muscles can send input to my head that my legs are somewhere else so to speak creating my dizziness?
And ofcourse im nervous if it is ALS but maybe it Just started with umn signs?
Its the wait and see approach i have done since April, and nothing has improved it slowly getting worse that makes me anxious, and my symptoms feels like progressing.
 

ShiftKicker

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Mar 16, 2015
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4,535
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DX UMND/PLS
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06/2015
Country
CA
State
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Vancouver
I you haven't already, please read here: Read Before Posting

UMN issues are apparent with a clinical examination. It is not just brisk reflexes but a particular pattern of abnormal muscle responses to stimuli. With regards to dizziness, this is not something that would point in the direction of motor neuron disease. It's clear your symptoms are affecting your ability to carry out your day to day life, and for that I am sorry- but this does not look like the pattern of symptoms that would tell a doctor to be concerned about motor neuron disease.

I hope you find some answers soon. It sounds like your doctors are taking you seriously and are exploring different reasons for your symptoms. Sometimes it takes some time to see what happens next before they can figure out what's going on. It's difficult to have to wait.
 

Mobz84

New member
Joined
Oct 15, 2021
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
NO
City
Oslo
I Just came back from my appointment with a very high skilled neurolog, that have been working with many Als patients in the biggest university hospital where i live. He says after clinical today he is 100% certain its not Als, so i start to address my psychological well being. And continue from there to find answers.
Thank you all for this very good and informative forum, and that you give time to People like me answering questions. I will make a donation, and now im leaving, and continue looking for answers.
 
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