Status
Not open for further replies.

JacobS157

New member
Joined
Mar 13, 2018
Messages
4
Reason
Other
Country
PL
State
zachodniopomorskie
City
Szczecin
Hi,
First of all I am very sorry that you are experiencing or having contact with this terrible disease. I would be very grateful for any help and advice concering my symptoms. I will try to post all of my symptoms and worries down below as clearly as possible but I warn you it will be a long post. If there are any grammar mistakes or unclear sentences I am sorry. English is not my native language.

I am 20 years old male from Poland with no family history of ALS and frankly any other neurological disorders. It all started last year in October when I was getting a lot of sensory symptoms like tingling or numbness and sensation of muscle burning throughout my body. My muscles were also getting tired faster than before. I also had a lot of body tremor- my hands,legs and abdomen were shaking preety badly( and I still have this but not as severely). Then I went to the neurologist and he said that the tremor was due to stress and sensory symtoms due to vitamin B12 or D deficiency and he was probably right, because after taking vitamin B12 I don't have them anymore. But in the meantime I googled my symptoms and I saw that I might have MS or ALS and that's how the real hell started:sad:

One month after my first neurologist appointment I started having fasciculations. Firstly in my calfs then after about two weeks throughout my whole body. That's how I started to be really anxious about ALS. I went to another neurologist and he did basic neurological exam. He said that I have bilateral brisk reflexes but he wasn't concerned at all. No Babinsky, Hoffman, clinical weakness etc. He said that it is probably bfs.

I did EMG one and half month ago on my right thigh, hand and arm and there was found one fibrilation in my arm :shock: but the neurologist was not concerned at all and he said that it is bfs. I read that you can't have bfs diagnosis without clean EMG. Now I am really clueless, because since then I have myriad of other symptoms:

-perceived slurring only noticed by me but still real. I am not speaking as fluently as I used to. I am stumbling over my words, mispronouncing certain words, talking slower, having whistling pronounciation of S letter.Overall talking takes more effort. And I was always very proud of my verbal skills but now I have no urge to talk at all.

-occassionally mild shortness of breath- I have to take deep breaths.

-fast muscle tiredness for example when I am driving my left arm feels tired after few minutes of holding the driving wheel.

-a lot of sensory symtoms like: feeling of vibration under my skin ( some ALS patients have this symptom), feeling of warmth in my left foot, quick stabbing pain throughout my body.

-one of the most concernig symptoms is my left leg. It is a lot weaker than my right leg, it is getting tired a lot faster, after exercising it hurts more and while walking it feels off like it is heavier and less able than my right foot.

-my neck hurts while twisting it to the right side.

-after talking constantly longer than a minute my throat starts to be tired and hurts.

-my pinky in my right hand is tremoring while typing.

-body tremor even after mild physical exertion,

-facial muscle tremor while smiling or closing one eyelid especially when I am nervous.

-sometimes hearing hypersensitivity- certain sounds are irritating to my hearing.

-emotinal liability- sometimes I am happy and sometimes I have attacks of depression and I want to cry.

- fast muscle tiredness, disproportional to the effort.

-lack of hunger.

-sleep deprivation- I sleep less than usually.

-sometimes silent cracking or crushing sound of joint in my left leg.

-also a very worring symptom- brainfog, I tend to forget what I want to do for a few seconds, sometimes I say the wrong words that I didn't mean, conversetion requires more effort, lack of concentration, lack of motivation - is it a dementia, mild depression or neurosis ?

-bodywide fasciculations for 4 months


Tests that I have done:

-MRI- negative- so no MS or brain cancer.

EMG- one fibrilation found- no BFS ?

-Blood test for Lyme - negative- so probably no Lyme disease.

-Blood test for thyroid diseases and Hashimoto disease- negative.

-Test for Miastenia Gravis- negative.

-Also I am taking VItamin D, B6 and Magnesium but it doesn't help.

Questions:

-can I have BFS with one fibrilation found on EMG and can this fibrilation be the begging of ALS ?

-Can I have demantia in my young age or is this mild depression, anxiety or neurosis ?

-are bilateral brisk reflexes with one fibrilation on EMG and bodywide fasciculations with my slight pronounciation issues and weird left leg feeling and slight weakness indicator of ALS disease ?

-how long does it take from initial symptoms to the ALS diagnosis ? because I have my symptoms for only five months and I read that some people had them for years and still had diagnosis of ALS- especially younger people.

I think that's all that I have to say for now. What do you think about my symptoms? I am sorry that this post is that long and I hope that you didn't fall asleep halfway through my post. I appreciate your help !
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,932
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
City
Seattle
Jacob,

Answers to your questions are:

1) Yes. No. "One fibrillation" is nothing as is 1+ in only one muscle.
2) The latter. Dementia in someone your age would be something like a brain tumor, which imaging ruled out.
3) No.
4) Doesn't matter because you had an essentially clean EMG. If all the symptoms you reported were down to ALS, your EMG would have been definitely abnormal.

I would not be taking B6 only, but you might discuss a "balanced B complex" with your doctor.

The mind is very powerful. It can cause many strange feelings. If you look to your stress, sleep, work/school and social life with an eye toward doing what makes you feel better, generally, that is exactly what will happen. If not, counseling about your fears would be the next step.

Best,
Laurie
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,585
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
If you take B6 by itself and you take too much, it can cause neurological symptoms.

I would see my GP and let her/him make some lifestyle suggestions.
 

JacobS157

New member
Joined
Mar 13, 2018
Messages
4
Reason
Other
Country
PL
State
zachodniopomorskie
City
Szczecin
Thanks for your responses Laurie and Kim.

I don't think that I take too much vitamin B6 ,I try to take only small dose,because I also read that overdose of vitamin B6 can cause some neurological problems. In the begging of my symptoms I was taking a lot of vitamin B12 with vitamin B complex- maybe it was the reason of my issues.

Still though I am very anxious about my condition, because it clearly takes away from my daily life - problems with speaking,twitching, weird walking and overall a lot of sensory symptoms. I hope that I don't have or won't get ALS in the future- I would have to be very unlucky with my young age and a whole lot of my sensory symptoms that are not frequent with ALS. Still I think that there is something neurologically wrong with me and I hope that it's not MND disorder.

I have also one more question:

- Can GERD or two growing wisdom teeth in my mouth cause some problems with articulation ? Can growing wisdom teeth lead to TMJ disorder ? Because sometimes I have ear pain without any other symptoms and my jaw cracks.

Thanks for your help.

Wish you the best,
Jacob.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
2,677
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Jacob, do you need to maybe visit with someone who can examine you and you can ask these questions of them while they have a chance to check how they be affecting you? You are asking a forum that has a primary focus of assisting people with a neurological disorder about wisdom teeth. This really isn't a general health forum.
 

JacobS157

New member
Joined
Mar 13, 2018
Messages
4
Reason
Other
Country
PL
State
zachodniopomorskie
City
Szczecin
Great, now I have problems with breathing while talking. I am short of breath while talking. Is this a sign of bulbar ALS ?
 

Bestfriends14

Forum Supporter
Senior member
Joined
May 7, 2017
Messages
747
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
Jacob,

The more symptoms that pop up after each of your posts points further and further away from ALS. It's been suggested that you bring these concerns to your doctor. Continuing to badger terminally ill members and their caregivers will not get you the answers to your health anxiety. Please go to your doctor with your concerns. This is an ALS forum and you do not exhibit ALS, so why are you continuing to post? This is only getting in the way of you going to see a professional for answers to whatever is going on.

Good luck and take care.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
2,677
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Bestfriend is correct- If you are struggling to breathe, you should see a doctor.

Please stop posting here and go get proper medical attention. Do not continue to add to your list here- this forum can not help you in any meaningful way. If you choose to stay here and post instead of seeking proper in-person medical attention, that is a very big clue to us that you are not only not listening to the replies you are getting, but you are not actually interested in tracking down the source of your symptoms.

Please stop posting here and seek medical attention from an actual doctor. Feel free to report back what your doctor says AFTER you have seen one.
 
Status
Not open for further replies.
Top