Status
Not open for further replies.

luca83

New member
Joined
Sep 21, 2018
Messages
3
Reason
Learn about ALS
Country
ita
State
italy
City
milan
Hi ,
male 34 years old, italian (milan).

first of all:
1) sorry for my bad english (I will try to help myself with google translate, anyway you will find many errors in writing in English, sorry)
2) I dont want to be annoying for any of you, I understand very well your sufferings and respect u with all of myself, I writing this with all my heart
3) my post will be very long, sorry if I get bored, but I will try to be as short as possible (but it will still be a very long message because I have so many things to tell u . I will try to enclose everything in 10 minutes of your reading time, even if to explain everything in detail, it would take 10 days to read!)



this is my "strange" story:


- October 2004 (I was 21 and I was obese and sedentary): muscle fasciculations in the calves, and then after a few weeks spread in all body. I feel like "insects" on the face.
... neurological visits (here in Italy) and 2 emg, "everything is ok" ... we add "pin bites" a little everywhere (face too). MRI in the brain due to fear of MS, negative.
- mid 2005: small cramps in the toes and calves, during the stretching of those muscles
... other neurological visits, "everything ok" ("anxiety" but SSRI and similar did not help me) ....
- 2006: first tremors during small muscular efforts
- 2007: nothing changes (if I remember correctly, I had made a new emg that showed only fasciculations in the calves, "everything is ok")
- 2008: I accept these symptoms as "benign" (BFS), I trust the doctors ... but i start shaking my fingers if I take them to "medium effort" (not relaxed, not totally contracted, i hope u will understand what i want mean, sorry). the same thing happens to my legs if, sitting with my feet on the ground, I stand on the tip of my toes.
- 2009 (I was 25): I start a diet and I lose about 75 kg (150 kg> 75 kg)
- 2010: no rilevant changes (diffuse fasciculations, easily evoked cramps in the feet and calves, first cramps when straining the back or shoulders)
- 2011: new girlfriend. I no longer think about ALS / MND / MS ecc.. i dont more have visits or exams.
- 2012: muscular tremors "under stress" start to involve other muscle groups (abdomen, neck, facial muscles). for example, I cant keep my mouth open at the dentist, because I am accusing strong tremors in the mouth , neck ecc..
- 2013: stable. I enrolled in the gym to tone my relaxed skin, after a great weight loss. I also do a chiurirgic operation to remove excess skin.
- 2014 and 2015: all stable (fasciculations, cramps frequent everywhere, tremors from stress and tremors "of action", strange tingling etc.etc.). "electric shocks" under your feet if you lift your legs sharply .
- 2016: one evening I feel my arm "weak", I was sitting on the sofa and I was having trouble moving it. weak/pain .. I went to the emergency room and they told me I had an inflamed nerve. I performed an MRI of the entire spine and there was no problem. my left hand / arm, from that moment will have frequent "perceived weakness" (non-clinical), very frequently. sometimes, I find it hard to squeeze an object in my hand, like a blanket or a pillow, especially at night when I'm a little "sleepy". and besides, I feel I have less "dexterity" with small objects with my left hand, but I honestly i dont know if I have always had this problem. maybe yes, maybe no.
- 2017: strong back pain, of muscular origin, lasted about 3 months. I repeated a new MRI to the entire spine, and everything was ok. I also warned of the "burning / paresthesias" (like insects) under the soles of the feet. a slight pain in the knee, then passed. after a few months, I began to feel pain like "stretching" behind my knees, when I stood up after sitting for a long time. frequent dizziness and tingling of the limbs more and more easily evocable (I just sit a long time, to have the leg or both legs totally "asleep", and it happens to my arms or back).



- 2018: fasciculations increase, they become stronger and this time they involve ALL my muscles (really, everyone!). sometimes they are single flashes, other times like worms under the skin, other times repeated streaks for many days always in the same muscle (and other muscles, more randomly), other times they are "tugs", muscle that "pulls", cramps more and more easily evocable, etc. ecc. 90% of these fasciculations , in my case, are caused by muscular efforts (even minimal, like a simple movement how to stretch the arm to take an object) or by some positions (for example, at the feet and calves when I hold my legs crossed). 10% of these, are on muscles totally at rest. At night I have few (I think), in the days I have thousands and thousands, on ALL my muscles (from the forehead to the feet), especially after slight muscular efforts . Tremors of the muscles are also greatly increased when I use them (for example, holding a shopping bag causes a tremor in my arms, during their use and for a few hours later). The tremors of the fingers of the hands are increased when I spread them. Tingles have increased, and I have a lot of "pre-cramp" pain (like needles in the muscle) while using them (for example, when I drive o when I bring a bottle of water to my mouth, etc.). I struggle to keep my smile for a long time, or to chew for a long time, because my facial muscles are weaker. Often, after drinking, I cough. My voice gets tired immediately, hoarseness (loss of voice) more and more frequent, especially if I increase the volume of my voice for a few seconds (if I scream, my voice will be fried for hours). It seems to me that I scan the words well, but after a while 'I speak (2-3 minutes) my tongue seems kneaded and seem i dont pronounce the words more well (it is only noticed by me, not friends or family). My left arm always gets tired very easily (for example, if I hold my arm up for a minute, holding the phone to my ear) and my left hand continues to have "perceived weakness" (not clinical, for now) . Strange sensations like "drops of water" that flow on the legs and on the other muscles. I have also noticed, for about 6 months, weight loss of my 1 interosseous muscle (left hand) which is half of the right one (right is my dominant hand) , of my left calf (which has continuous fasciculations 7/24 for some months), and of my right foot (where I also feel a bit 'of weakness , but even this does not seem clinical weakness, for now). I also begin to have breathing problems, during small efforts (for example, taking the stairs or walking for a long time). I noticed that if I squeeze my eyes or contract an other muscle , the fasciculations begin and last a few seconds. I struggle to stand up for a long time, I feel weakness in my legs, feeling that my right leg gives way at any moment. In addition, I am increasingly struggling to perform fast and repetitive movements (like turning a screwdriver) with my left hand (where I have atrophy, but not recognized by doctors, who tell me "the human body is not symmetrical" ...). Finally, it happens to me that the fingers of my hands (or the muscles of my neck when yawning, and other muscles) remain "contracted" after a little effort, and they relax 2-3 seconds after the contraction stimulus is finished. If I force an object tight, the fingers of my hand will not relax immediately after, but after 2-3 seconds.

surely I forgot to list some symptoms, but these are the most important ones.

Blood tests (magnesium, thyroid, etc., etc., etc.) have always been normal, negative lyme. . I only have a vitamin D deficiency (14), but even taking the supplement (vitamin D, calcium, magnesium, potassium, etc.) nothing changes in my symptoms.

In the last 6 months, after all these worsening, I saw about 7-8 neuros here in Italy, 2-3 of them are the best ALS experts in Italy, and all of them say "I dont have that".
I also did some new EMGs, and they detected "neurogenic changes" in ALL the muscles examined (legs, arms, face): "AMP +1/+2, DUR + 1 / + 2, PPP + 1 / + 2" (and some fasciculations at legs), but they say "spine problems, NO MND". But my spine is very good (no hernias, no crushing etc.). For them "no fibs and no psw = no mnd "...

Diagnosis received: "back problems", "neuromuscular hyperexcitability", "spasmophilia", "BFS / BCFS" etc. etc.

Psychotherapy sessions have not helped me, because my problem is in my muscles and not in my head. So...

Now, I can imagine how much the people are suffering from this forum, and my respect is for all of you. But believe me, I dont have a diagnosis, I can still do almost anything (with a bit of fatigue) but now I'm not suffering less than you, psychologically . I have many small deficits, but I have (for now) no clinical deficits . But I'm very sick, really . Like everyone, I know my body and I know that my body is not functioning as it should. I feel sick, i have so many physical problems (I have not been at work for last 6 months, and now I risk being fired), but for the doctors (and for my family) I am absolutely healthy and only "hypochondriac". My fear stems from the fact that my physical condition is progressively getting worse, as well as cramps, fasciculations, breathing, voice, tremors, etc., etc., etc.

I am very afraid of having a slow MND, or an ALS that after a few years of "warnings" is now starting to take my muscles and my body .

I would very much appreciate your kind opinion.
A big hug, with all my heart, and I apologize in advance if with this post I disrespect to some of you. I hope you will understand my fears.


Greetings from Italy (and sorry again for my bad english)
Luca
 

KarenNWendyn

Moderator
Forum Supporter
Joined
Jul 29, 2017
Messages
3,762
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
I will admit I did not read every detail of your post. But here’s what I saw that tells me you do not have ALS:

14 years of symptoms. If you had ALS, you’d probably be dead by now.

you saw 7-8 neurologists who did not find ALS.

EMG showed no evidence of MND

So why would you expect us to tell you anything different?
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,189
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
As Karen says, you seem to be chasing this diagnosis. You don't meet the EMG criteria but you have some nerve issues. But do you want to keep "feeling sick" or do you want to feel better and move on with your life?

To feel better, I would ask about seeing a physio. Quite commonly, they can address spine and limb issues so that you feel fewer symptoms. To address your own anxiety will take focus on stress, sleep, movement, lifestyle, etc. Even little changes like making sure your sleep is undisturbed can pay large dividends. And with large weight loss, though a great accomplishment, a nutritionist might help you ensure that everything is balanced now.

Best,
Laurie
 

luca83

New member
Joined
Sep 21, 2018
Messages
3
Reason
Learn about ALS
Country
ita
State
italy
City
milan
Thanks for your answers. I know your answer will not change, but I would like to complete the list of my symptoms that appeared in last 1/2 years

<mod: removed large amount of quoted text>

- tinnitus and frequent buzzing in the ear
- small movements of the tongue when I take it out of my mouth (fasciculations?)
- frequent burning of the tongue, very often dry and "anesthetized"
- much muscle fatigue and great exercise intolerance
- fatigue in the right leg, with frequent burning of the tibia / right shin (for example when I drive, with the foot on the pedal)
- frequent pain (like a small cramp) to the right big toe when I walk, and occasionally, also recently, to the left big toe and other toes
- frequent muscular pains, like "pre-cramp", muscles that pull, needles stuck in the muscles when I use them
- strong and rapid vibrations of the muscles (fasciculations?) , other times some real tugs
- neck and limbs, sometimes, give up for a thousandth of a second, triggering the head (or the hand, or the leg)
- frequent heel pains, especially in the morning as soon as I get out of bed
- pain / weakness when I do some movements with the left arm

tonight, I had a big cramp in my biceps femoris. I was simply sitting and, bringing my foot under the chair, the biceps femoris hardened just like a cramp, causing me much pain. it had already happened to me in other muscles (hands, biceps, triceps, shoulders, trapezius, back, abdomen, feet, calves, etc.) but never in that muscle.

I feel increasingly scared, sorry.
Thanks in advance if you want to give me a few more words of reassurance. Good night.

Luca
 
Last edited by a moderator:

Bestfriends14

Very helpful member
Forum Supporter
Joined
May 7, 2017
Messages
1,501
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
You do not have ALS. It's best to move on and enjoy the life you've been given. Terminally ill free.

Good bye and good luck. No need to post further.
 

luca83

New member
Joined
Sep 21, 2018
Messages
3
Reason
Learn about ALS
Country
ita
State
italy
City
milan
Thanks for the reply.
I can imagine that a person without a diagnosis who asks for opinions here may seem a person who is not very sensitive and not very respectful. But I assure you that this is not my case. I am a very respectful person with all the people of the world, even more with those who have a serious illness (als or others). please do not make me feel guilty for asking for your opinion on my health condition. I have seen doctors for 14 years and nobody has yet been able to tell me what I have, while my body gets worse every day (fascicultations, cramps, weakness, muscolar pains ecc). I am struggling to walk and do the most trivial daily actions, and I have read of some cases here where BFS / BCFS turned out to be als after 10 or 20+ years.
my last emg sucks, but no doctor still wants to tell me what I have, with extreme clarity.

I still apologize to all of you if I did not seem respectful by writing here.

I will not write further.

a big hug to everybody .
 
Status
Not open for further replies.
Top