31 male, scared of symptoms I cannot understand, grateful for your interest

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pawel

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Learn about ALS
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PL
Hello, I am Paweł, 31 male, Poland.

At first, I want to explain that I have read general comments regarding "asnwers to common concerns..." and many other comments made by people in this section of the forum. I am aware of the fact that the forum should be a safe haven for people with ALS and their families. I respect that and I don't want to the be the one who just wreak havoc. I hope you will be able to understand my concerns and perhaps give me some answers/advice regarding my personal experiances. I will be grateful and I promise not to disturb you further. English is not my native language, so forgive me if something is unclear (especially regarding medical wording).

I will really appreciate your efforts to read my post carefully. Bless you all.

SYMPTOMS:

My problems started at the end of January. It involved palpable cramps in my left thigh (small bunch of muscles) - not visible, but I could feel the fast pulsing when I was touching my thigh. It lasted all day, but in the evening was less intense. The second day it happened 4 o 5 times in the morning hours before it vanished.

Over the course of next days I observed other symptoms - unpleasant, but not really painful pressure or twinging in different parts of my body (palms, hands, legs, feet). Its nature was strange. It never happened at the same time in more than 1 point. It was "riding" all over my body (legs, arms, some twinge in my heart area). I also had problems with more opressive twinging in the area of my shoulders (mostly left shoulder - it still happens from time to time as well as similar pain in my hips which makes walking uncomfortable for some time). Due to this feeling I started to have problems with my sleeps and finally one night was literally sleepless - without even a minute of sleep. I felt terrible and low.

The worst thing was that I couldn't make up for lost sleep, because every attempt was failed due to hypnic jerks (kind of myoclonus, but it only happened when I tried to sleep). The next night after the sleepless one I woke up around 4 AM feeling internal shaking/tremor/electricity in my both arms. No visible signs of that, just a feeling inside of my body. I was panicked and I had to drink a cup of water, walk around a room and after 20 minutes the feeling was gone. But the day after I started to feel it again in the afternoon - this time it was present in my legs as well. The tension was so high that in a certain moment my right foot experianced a short myoclonus, a kind of a rapid kick which pacified that internal shaking/electricity. Since then I have never experianced it second time.

In the meantime I was experiancing some minimal numbness (mainly just after I woke up) - sometimes it was in my right foot, sometimes left hand and fortunately it was enough to move my limbs for 10-15 seconds to stop it. However, one time ths numbness reaches a tip of my left middle finger and it lasted for about half an hour. There were 5-6 days with these symptoms. Now they're gone or I don't notice time.

The evolution of my symptoms was rapid and without a specific pattern. When some were gone, some other appeared. During last three weeks I had a problem with my left foot and the lower part of my backbone. I started to feel a permanent internal shaking which was migrating between these two points - one time in a foot, other time at the lower part of my backbone. The left foot was also experienced with strange tingles or pulses in it different parts. The problem stayed wit me all the time when I was sitting or standing without any movements - I always felt something in my foot. When I was lying in my bed, preparing to sleep, I felt my shaking backbone and foot, but after more time spent in this position It was possible to appease these symptoms, so I could sleep. Day after day it was the same scenario.

Now, there is anothe phase of my symptoms. I feel that my fasciculations worsened. They started at some point with other symptoms, but now I think they are more intensified - mainly in my both legs (calves, rear side of the knees - I feel like some worms are walking there, thigs), rarely they are present in my arms and there were occasional pulses on my neck or on my left side of torso. On the other hand, internal shaking/electricity in my backbone seems to be almost over and foot is also much more calm. Fasciculations are usually subtle (excpetions: there was one big shaking around two weeks ago in my right thigh and, of course, the first symptom in left thigh I have described at the very beggining of this post - now from time to time I feel there in my left thigh some internal shaking/electricity). However, at least for now, I feel it almost all the tim (every two-three minutes something pops out, usually like a single click). I also want to tell you that "all-over-the-body prickling" was back two days ago, but now vanished again. It happens with most of my symptoms, a real rollecoaster.

In general my left side of the body is more "active" in terms of these symptoms. Sometimes I feel also some "energy" in my left arm, mainly hand (for example, when i touch something with my index finger I can clearly feel its pulsation, it's not as strong as in my right finger etc).

The most awkward thing for me is that all those symptoms seem to be so random. No clear pattern. Each day brings a new "surprise" and I know I couldn't even describe it properly in my post, because it's not possible to express their complexity, time of appearance etc.

TREATMENT:

Due to my bad mental conditions and permanent hypnic jerks I went to see a psychiatrist (3 weeks ago) I was given different medicaments - Quetiapine, Trazodone for a sleep and Pregabalin for nerves/muscles. Eventually I take one tab of trazodone before sleep and two tabs of pregabalin (morning/evening). My sleep is still poor, but I can sleep for 3-4-5 hours then I wake up and I can sleep for other 2-3 hours. It's not possible for me to sleep a full night without disruptions, but at least hypnic jerks are gone or they are very subtle.

It's strange to admit that, but since the end of January I visited....7 different neurologist. I did this because every 3-4-5 days I had new set of symptoms and I couldn't bear it. Most of those doctors examined me and claimed that I am completely fine and it's all about stress, lack of vitamins etc. They were told by me that my father had multiple sclerosis (MS) and they perfectly knew that I was so scared and nervous talking to them. Perhaps this is why they didn't suggest any tests etc. My clinical examination was always perfect (moves, feelings, strenght). Only one doctor (number 4 on my list) suggested letant tetany as my symptoms were not typical for any disease. I was supposed to do some blood tests and electromyographic ischemic test. There was also one doctor who said he had no idea what was going on, so I would need to do a brain MRI. Most of the doctors reccomended me to see a physiotherapist.

I did MRI and it was perfect, but I also did electromyographic ischemic test and I was diagnosed with tetany (neuromuscular excitability). The other doctor I saw immediately after the test accepted the results and gave me a treatment guides. However, she was quite sceptic to confirm it as latent tetany as a specific disease (I know there is a dispute between neurologist how to clasify it). All in all, I was given a reccomendation to take magnesium, calcium, some medicament with different B vitamins and continue Trazodone and Pregabalin. The time of the treatment is supposed to last 30 days.

Few days later I was fianlly able to see a doctor who originally suggested tetany test. She explained it to me very carefully. She was quite sure it is latent tetany. I felt somehow reaassured as most of symptoms she presented were similar to mine (even some occasional tingles on the head). She didn't change my prescribed treatment, just suggested to take one more tab of pregabalin in the morning. Now it's almost two weeks since I started this treatment, but I don't see results... As you know, the symptoms are just changing....as usual.

It's also almost a month since I am seeing my physiotherapist. It was a good choice. I always have a short reassuring conversation at the beggining and then a body massage. During the first meeting she also examined me and she thought I was absolutely fine in terms of my general condition, movements etc. Last time I saw her on Monday she confirmed that my muscles are fine, not tensed etc. I always feel better for some time after the visit.

I also try to work with my psychotheraphist. I've been seeing her for 3 years as initially I had some problems with relationships, some past traumas from my childhood, intimacy fears etc. She, unfortunately, doesn't know much about latent tetany and she doesn't have experiance with people who have similar symptoms.

SUMMARY

I know I have a diagnosis, but I am still not sure it if it what it is. Latent tetany seems to be something so... elusive and vague. Does it have something in common with ALS? I searched this forum to find some connections with ALS, but I couldn't find it. Internet is also very limited in terms of information on letant tetany. I am also not sure if my symptoms are typical for latent tetany. You know... when I feel those fasciculations.... it's terrible and I am afraid. I am afraid that the treatment doesn't work. No doctor adviced me EMG test, no doctor seemed to be worried, but all in all most of them didn't recognize latent tetany! And you can believe me that I was visiting experianced neurologist with a long professional history.

I can tell you that I did a lot of blood tests. All is perfect - magnesium, calcium, D3 vitamin, creatine kinase, general morfology, erythrocyte sedimentation rate, CRP, thyroid, parathyroid hormone, uric acid, B12 vitamin and many others. Only folic acid was low, so I got some suplementation. I know that low folic acid is connected with neurological symptoms, but from what I have read it doesn't include fasciculations or these internal shakings.... Moreover, Pregabalin is probably responsible for lowering the level of folic acid. So i don't know if my folic acid was low even before the symptoms started or it happened due to Pregabalin (3 weeks in use).

I was suggested by one person to do more a advanced test for Lyme disease. Originally I did some basic test and it was negative, but among people with borreliosis it is often considered as something useless in terms of more complicated Lyme disease versions (neuroborreliosis, for example). It is very expensive, but perhaps I should try it.

Today I woke up at 4 AM, coudn't sleep more. There was a continued small-area twitching in my left thig. Now I feel my left shoulder again. It radiates to my left hand and it feels weak for some time. I learned this feeling well as it happens from time o time.... Some internal shaking is now reaching my left thigh from time to time as well as my left hip is stinging. I feel tired and mentally devasteted. I never had any serious health problems and all of that...is a shock.

I read a lot. though some people advice me not to do that, but I need some answers. I am a logic person, I need explenations and I always had problems with emotions, but never felt such a fear. I try to liberate my mind - when I meet with some people, when I don't think too much about my symptoms they seem to be less active, but I still cannot tell you that I find here some logical connection, that's psychosomatic too. I don't understand it.


I will really appreciate some feedback.
Thank you so much.
Paweł
 
Hi Pawel,

Due to your actual diagnosis and the fact you've been cleared of ALS via electrodiagnostic testing and a clinical exam, an ALS forum would not be the place to receive information or support. It sounds like you are receiving appropriate medical care, but may also need to find someone to help you deal with the anxiety that can come with a life affecting diagnosis. Your continued searching online for other answers is preventing you from receiving the appropriate treatment and increasing your anxiety about a disease you've been cleared of.

While it's normal to question things, it appears you are unable to accept the condition you do have and are looking for other reasons for your already medically explained symptoms. We can't really provide you the info to support that, nor would it be responsible to do so. Please keep with your treatment plan set out by your doctors, and if your symptoms do not improve, return to your doctors for further exploration.

Take care
 
Pawel, were you evaluated for restless leg syndrome/PLMD and other sleep disorders? You report some of the most bothersome features and these can carry over into problems during the day if not treated.

I would not worry about fasciculations when you are awake -- many people that visit here have these and there is nothing really wrong -- but these can be troublesome when you are trying to sleep. So that is what I would focus on.

"Latent tetany" makes no sense to me as a diagnosis, but you could try a dab of magnesium lotion where the twitching is most bothersome, and adding calcium to your diet/considering a supplement in conjunction with your doctor. Balancing your intake of Mg, Na, K and P as well would also be important.

Pregabalin comes with many of its own side effects. I would not want to think of you taking it over a long term without a sound reason. That could be a discussion with your PCP. I would try to reduce the number of neurologists that you see so that you can work through a good plan.

I would also consider warm water aquatherapy, Pilates, tai chi and other bodywork that elongates the muscles.

All the best.
 
Last edited:
Thank you both for your time and opinions. I really appreciate. I just want to clarify on few things if you let me:

you've been cleared of ALS via electrodiagnostic testing and a clinical exam,
To be precise, as I have already mentioned, it was the electromyographic ischemic test. I think there are different kinds EMG tests (?).

All I know is that this test showes neuromuscular excitability. And I feel it. As stated before, I feel some extra energy migrating through my body, some internal pulses/electricity, mainly in left foot, left tigh and at the lower part of my spine, rarely in my right foot or 2-3 times it happened (byt very, very subtle) in my left palm/hand. Sometimes when I sit (but definitely more often when I lie at bed at my back, slightly bended) I feel how my lower spine is shaking. Then I need some time to calm it or I need to change position.

Pawel, were you evaluated for restless leg syndrome/PLMD and other sleep disorders? You report some of the most bothersome features and these can carry over into problems during the day if not treated.
No. Indeed, the truth is that I had sleep problems for a long time before it all happened. I usually slept for 6 hours, often with distrupted, with awakenings, yet never had any problems with my muscles or nerves.

I would not worry about fasciculations when you are awake -- many people that visit here have these and there is nothing really wrong -- but these can be troublesome when you are trying to sleep. So that is what I would focus on.
In general, during the late evening/night hours, my body feels more calm and relaxed despite some small symptoms present (perhaps it is caused by medicaments - Pregabalin comes 2-3 hours before my sleep time, one hour before I take Trazodone for a sleep. Fasciculations are present when I am resting during the day (or just before my sleep time) or just sitting at work. When I'm moving, when my body is active I don't feel it - any fasciculations, cramps etc.

"Latent tetany" makes no sense to me as a diagnosis
This is why I dared to open my personal topic here to ask you about its connections with ALS, about its meaning etc. As previousy stated - I know that this forum is about people with ALS, but I just hoped for some opinions as you are from different parts of the world, have different experiances with many symptoms, perhaps better educated doctors and specialist you were able to meet and get some knowledge. As you can see, despite numerous visits I have just this Latent tetany diagnosis corresponding treatment.



I just don't see any pattern of these symptoms. Fasciculations in different part of my body (90% in legs), stingy pain in my left shoulder, internal shakings, sleep problems due to hypnic jerks, small and rapid cramps from time to time (though I am not sure if they are just more prominent fasciculations). Each day usually comes with one of these more prominent. My anxiety is horrendous. I feel lonely (despite friends all around me, but I live alone), tired, I have different fears and when symptoms attack me I tend to search on them and try to find a reason instead of shut off my computer. I realize it's not good, but my psyche is weak. This is how I am.

I am sorry for this personal dwelling and thank you once again.
 
Don't let the lack of a pattern worry you. Often one thing goes wrong, and the rest feed on it. I suspect fragmented sleep was a precursor to many of your troubles. That is why I would want to rule out a sleep disorder. Lack of issues when moving around and more issues at rest or trying to fall/stay asleep is one of the signs of RLS and similar disorders.

Pregabalin dosed once a day doesn't work as fast as you imply. I suspect a placebo effect at least in part.

Not sure what "neuromuscular excitability" is without seeing EMG results, but it's not a diagnosis and therefore not really a concern from my PoV.

I encourage you to find the best neurologist you have seen, get screened for RLS, ask for a recommendation for a better PCP if needed, and work with this team to feel better.

Accordingly, I am closing this thread so you can get to work on doing just that.
 
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