A new member with possible BFS

[alex75]

Hello,

Let me introduce myself, i'm Alex a 38 old male from the Netherlands. My personal situation is that my wife has MS and we have 2 girls (4 year and 1.5 year), the youngest is still not sleeping well. I will mention that also suffer from hypochondria and had it good under control the last 5 years.

Then came the moment in late august / early september that my right foot began to feel strange, i went to the doctor and he sent me to the neurologic. He examined me and orderd a MRI-scan, he want to see if i had also MS. The scan was clear and that was that, he told me nothing was wrong and i could go but my symptoms got a little worse (i feel a lot of tingling in my arms and legs). I also noticed some muscle weakness (arms and legs) but i can still do almost anything i want so it's more a feeling. A month ago the curtain has fallen for me, several symptoms together has triggerd me to think i had almost an AAA (backpain,stomachpain, cramp in my gastrocnemius muscle and a cold nose). After a visit with my doctor again, he want to reassure me and send me for an echo, which turned out to be normal (of course).

But in the mean while i get more twiches in my legs + muscle pain and cramps, at this time I consulted Dr Google and freaked out finding information like ALS. After this I lost complete logical sense, then I found this site which gives my mind some rest. But recently I get another symptom which triggerd me again, my tongue is acting funny and i have diffulculty with swallowing (need some water to make it a little easier). The tip of the tongue feels odd and my mouth and tongue are dry and irritated (my wife says my breath smels like sh*t), this results in a different pronaunce as i can hear for myself (someone else doesn't hear any difference). When i look at my tongue is see a lot of twiches and of course i freaked out again about having ALS.

I don't know what to believe anymore, i see a lot of the same symptoms in BFS which i have but the doctor or neurologic have not spoken about BFS. I noticed that when i start to freak out the twiches get worse, start all over my body from my left eardrum to my legs and also have quite some buzzing sensation accompanied with strange faque feelings and tinglings in hands and feets. Does ALS react the same way like BFS on stress?

I've consulted the doctor again yesterday and thursday i can see a psychologist to handle my fear, and for 10 December i have an appointment with the neurologic again for a next checkup.

Alex

[Yuliasir]

Hi Alex,

as for me you represent one of the typical kinds of this community member, namely a) with previous history of health anxiety, b) with the realtive having MND, c) parent of 2 little kids one of which is usually a toddler or small baby (deprived sleep is obvious).

please do not worry about your condition becasue of the fact your doctor did not mention BFS. My own neur did not know that condition and wrote 'benign myoclonia' as my diagnosis so I am pleased to have whatever starting with 'benign'.

Cramps, buzzing, tingling, sensory issues, with unilateral preference - it is typical BFS picture. Tongue twitches are so frequently reported that they may not be considered something new or scary.
Yes of course ALS people can have and mostly have severe stress reactions but unlike them we do not have major ALS symptomes like clinical weakness and deteriorated reflexes.

hope this would help a bit
regards
Yulia

[alex75]

Thank you Yulia for the kind words.

Yesterday something strange happend, after cramp has gone at the backside of my upper right leg the right feet feels normal again. I don't understand it myself but i think this isn't possible with ALS...

The human body is a strange thing...

Last night i used diazepam for sleeping better, what a relief a good night sleep

[Yuliasir]

my wife says my breath smels like sh*t

that is by the way may mean you rather have gastritis, which is also very common in BFS people (and any other to be honest, but BFS people may have also kind of autoimmune one, usually not symptomatic with pains or indigestion but visible on gastroscopy as certain gastric wall damage), and maybe all what you need for that issue is a visit to gastric specialist. Usually H-pump inhibitors help with that at the same time resolving swallowing issues in a very magic and instant manner.

I probably did not understand well what had happened to your leg - if it felt better after cramp than befor or you just do not have any post-cramp pains, but anyway bot cases are good on my point of view.

recentrly we had a post here related to so called ratcheting (also common phenomenon in BFS) and the summary was that this is due to the fact that our musclces have excentric movements. So maybe our cramps are also due to excentric tension and sometimes might even improve muscle layout? Who knows!

[alex75]

Hello again,

Almost 3 months further and time for an update, the odd feeling in my right leg is mostly gone but my left leg is taken it over. In the month december i've used Alprazolam to relieve the health anxiety and started with Lexapro for the long term, my twitches has reduced to a few a day (mostly random in my leggs). My left feet is now not the best part of my body, tingling / buzzing (cellphone like) and numbness feeling come and go. I've also noticed that both hands have some cramp but this not always there. The neurologic examined my condition again and send me for an EMG, my EMG wasn't great because my nerve conduction was slow. They now talking about polyneuropaty due to demye-linating of the nerve, this explanes my odd feeling in my leggs but is this the first sign of ALS. So far as i know sensible problems are not a sympton of ALS but i'm still worried about it. Next week i have a next appointment with the neurologic to review my bloodresults for possible causes for the polyneuropathy (fingers crossed).

@Yulia, i've been using H-pump inhibitors sinds my early 20's (first Omeprazole, then Pantoprazole and now Esomeprazole).

[Yuliasir]

hey, then they could add to your twitches due lo lowering Ca at long term and high dosage...

hope your bloodwork would be still ok in vital parameters

[stucharlie]

Hi, I'm new to this board.
I'm 21 male from the UK.
It all started about 5 months ago when I was told I had a sinus infection, by 4 different doctor, I had severe brain fog and just dizzy and not feeling my self. A month went by I was a bit better but not 100%, I got given three weeks of antibiotics still no difference. A few weeks went by and twitching started behind my left knee and suddenly I got twitches all over, back, bum, calfs , feet . I looked online and though t *beep*. I went back to the docs who did a reflex check and said that's fine. The twitching has been going on for 3 or so months and I'm worried sick, the doc said it was anxiety and gave me venafaxine but the twitchin is still here, all over but more so in the legs and feet. It stops when moving and I sometimes get buzzing and a slight tingle. Almost feels like something under my skin but more recently aching calfs that come and go. I worry so much and I even watch my self walk encase I trip or stumble. Can anyone give some reassurance? Thank you , p.s blood test came back normal.

[alex75]

Hi Charlie,

When you read BFS in a nutshell (viewtopic.php?f=2&t=203), you know that fear it's self is causing you to twitch all over. De positive thing is that what you fear (ALS) isn't randomly but begins at one point in your body and moves on from that part. You mentioned brain fog / dizzy but that isn't a symptom of ALS, you said your bloodtest came out good but did they test youre B12? Because severe sinitus / brain fog / dizzy / not feeling youre self / twitches / musclepain / cramps / trip and stumble etc. are also symptoms of B12 deficiency. I didn't mentioned it in my above post but my B12 level was 195 in december, this is above the minimum level of 150 but low enough to have severe B12 deficiency symptoms. So i started to use B12 supplements (5000mcg methylcobalamine melt tablets) and magnesium citrate 200mg with positive results.

But the key word is try to relax, easier said than done, but the fear it self is the fuel to start all your twitches...

[alex75]

Now 6 months further and time for another update, de bloodwork was good (only a lower ACE which was less then 10) so nothing to worry about that.

The months passed quickly and my condition is getting better, in my left foot a few toes still are little numbness and my right knee is not feeling great but overal it's ok. In my search for answers i found a possible explaination in the fact that i have a lot off dental amalgams, i went to my dentist and told him of my concern about these amalgams. In the month june i had 3 appointments with the dentist tor replace the 13 amalgams for something less harmfull, he did this with the necessary precaution (a rubberdam + cleanup suction ).

The fear of ALS is still present but much less than last year when i had a little nervous brakedown...

[TwitchyDoc]

Your swallowing issues are most likely caused by the dryness of your mouth and so is the difference in pronounciation. In order to produce the sounds correctly, the lips needs to lubricated. Try to whistle with your lips dry

I dont think there is anything alarming in your case, it sounds like many of us here.

Docen

[alex75]

Hi Docen,

You're probably right, the only sad thing is that i was doing really fine until last week... The combination of tongue issues (during the night i press my tongue hard against the roof of my mouth and do severe gnashing) and a odd feeling in 2 toes in my left foot (numbness) + a buzzing feeling underneath my left foot is triggering me to think the worst... I even had some random twitching in my limbs.

The fact that the dutch ALS-foundation is having a huge campaign to collect money for research, the whole town is hanging full with posters, isn't helping either.

I try too convince myself that is it nothing bad, but it is not easy.

The good thing is that my condition isn't getting worse (and even is getting better) since last year and if i should have ALS the situation probably was getting worse without a doubt.

Alex

[alex75]

Hello, again....

It stays difficult to not think the worst, my left feet symptoms are the same and my right knee and upperlegg are now not feeling great too. My knee feels like is wants to click (sometimes your knee or ankle needs to make a click sound by rotating it so the odd feeling goes away) and the upperlegg is stiff, this combination allows me to think that i'm not able to walk good and don't have enough strength. But i still can walk / walk stairs with a child in my arms / cycle to work with normal speed. So what must i think of this? Probably nothing but it is not easy...

It is another weak period for me, maybe the change of weather triggerd it.

Alex

[alex75]

Hello again,

And again a new period of weakness, i have managed to accept a part of the twitches but the last month my left hand began to feel bad. A few months ago when i was riding my bike a get a lot of pain below my pink when i was using the clutch, from there the left fingers started to tingle a little bit but the past few weeks my hand is stiff and tingles a lot + there is a nice twitch near my ellebow (it looks that my little muscle shows a heartbeat) and my biceps feels strange and have pain. At the and of the day my whole arm is feeling bad. So you'lle can guess the fear for ALS is back again.

I was reading on a dutch forum that ALS can start with tingling / numbness / twitching but i don't know if this is true, if i read BFS in a nutshell it always comes with real weakness and that isn't the case with me. I can still lift my children and more of those things but still the fear for ALS is high. After a good noight sleep the symptons are almost gone (just feel a bit stiff) but when the day progresses the symptons are getting worse.

Whaaa why can't i get rid off this fear!!!

[Yuliasir]

Because this fear is a symptom of disorder itself - a mood disorder.
which of course should be treated if you wish to get rid of it.
mood disorders may get in a kind of remission by thermselves with a time, but the rate of recovery is so slow and the danger to get a relapse for virtually any disturbing stumulus is so high and it is so debilitating to live in the mood disorder... that my advice is always to seek psychological and/or pharmacological help. I was trying both ways in y life - patient waiting for self-remedy and intense therapy, and must say meds and self-consciouness work faster and better ))

[alex75]

Hi Yulia,

Thank you for your kind advise and fast response, I have taken the route you descripe. I went to a psycholigic health centre to get hold on my "bad" thoughts, and i followed a mind fullness training to accept my physical shortcomings. The most terrifying stays that i can see a twitch near the inside of my ellebow and not feel it really twitch + the strange feeling in my left arm, that triggers me to think the worst and i can't help it...

I have taken for 1,5 years escitolapram with combinatian of psycholigic treatment with for my feeling no result...