Please help

Status
Not open for further replies.

Connor74

New member
Joined
Feb 16, 2021
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
Hello and thanks for your opinion.

A summary of my story:

Almost five months ago I had a traumatic health scare which caused me a significant amount of stress together with many unexplained physical symptoms. I quickly lost my appetite started having digestive pain, and within a few weeks ended up in ER with transient strong involuntary muscle contractions that would last about an hour then stop, leaving me physically exhausted. The ER doc said this was likely a panic attack but noted that my potassium levels were right on the bottom of the range.

After returning from hospital the stress regarding my health and the new low potassium value continued to play on my mind. Fatigue started to slowly affect me and my sleep became fragmented, insomnia set in around four months ago and a strange sensation of prickling in my hands.

Then three months ago my doc told me I needed to take a strong course of antibiotics to clear a stomach infection pylori. While doing this I felt worse than ever but continued with it to completion. The fatigue now was worse than ever and I started getting strange muscle jerks and twitches in my sleep. Of course my doc said this was all due to stress and advised I take a benzo for sleep and if that didn't help start on an anti depressant.

I took the antidepressant and it helped to get to sleep but not stay asleep, I was having terrible dreams and waking every hour all night long and was convinced I had done terrible disease. Further trips to the ER and the hospital neuro told me I was fine but was depressed. I was given SSRI and told it would fix all my issues.

A month ago after feeling like a zombie on antidepressants and wondering if the fatigue would ever go away I decided to ask my doc to send me to a neuro for EMG and NCS. I told him I had been suffering from muscle twitching and fatigue / weakness and needed someone to do a proper thorough exam. The doc agreed and a week and a half ago the neuro evaluated me and said not to worry, I don't have any neurological disease to worry about.

I felt reassured for about a day, even though I had no answer as to what was causing all my problems. Now I realised something and it has me concerned again.

The Neuro did a nerve conduction test on my right leg and arm and stated that my nerve velocity was normal, in fact even faster than most people. He also said my reflexes were stronger than normal but the same on both legs and not a concern.

He then did needle EMG in my right leg just above the knee (inner quad I guess) and while testing he asked me to push my knee down against the surface I was laying on while he measure the response. He told me he saw no fib or fasic and everything seemed completely normal. I was suprised about no fasic and said it might have been because I was stressed. He assured me that fasics can't be stopped or controlled if I had something serious.

Now, heres where I need your help. I don't why he only did needle EMG on that one muscle in my leg, I was thinking later about how I have constant twitching in my calves and only occasionally in my quads. But he didn't ask which muscles are hotspots to test. I've even had muscle aches and cramps in my calves together with a lot of tingling in my feet and other parts of the body.

Should I try and schedule to see him again to check my calves this time? Or would the EMG in just that one spot have shown any issues with the calves anyway?

I apologise if all this sounds ridiculous but I have had months of health anxiety already and want to stop worrying and going around in circles.

Thanks to anyone who can help me!
 
Last edited by a moderator:

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
9,748
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
The EMG you had was enough, but I would find a new doc to replace the one who is trying to throw a [generally unwarranted and dangerous] benzo at sleep -- circa 1960's. And if you didn't agree that the antidepressant was warranted, or it's not working well, you are certainly within your rights to ask about tapering or switching drugs.

Mildly low/borderline potassium and electrolyte imbalances can certainly be associated with fatigue and twitching, as can SSRIs and certainly benzos. The latter two are also associated with fragmented sleep and nightmares. Benzos knock you out, but in an artificial way. Some SSRIs are more sedating, others more energizing, but either way, often affect sleep. The antibiotic(s) you took are behind you, but any symptoms they caused shouldn't be shoved into a psychiatric side of the menu nilly willy.

Most electrolyte imbalances/deficiencies are fairly easy to fix with diet and hydration-- you can find tons of high-K, etc. food lists on the web. The idea is not to go wild but to "eat bright" [foods] and balance your diet with produce, good fats, and complex carbs.

One key to your distress is the idea that one thing is causing "all your problems." That is seldom the case. Find a good internist who will work with you to "de-prescribe" if needed, maintain your physical and mental health, and not blindly follow someone else's assumptions. The good news -- there's no reason to worry about ALS.

Best,
Laurie
 

Connor74

New member
Joined
Feb 16, 2021
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
Hi Laurie, first I want to thank you so much for taking the time to respond to my post, I know how valuable your time is in supporting people on these forums who really really need it.

I will definitely look into doing more to start addressing potential electrolyte and mineral / nutritional deficiencies. I'm really hoping that something like this can help with the muscle twitches, stiffness and cramps as I've previously never experienced such issues.

One thing I forgot to mention in my post is that I had also recently seen an endocrinologist and had my testosterone levels checked twice about a month ago, they came back very low at 160 and then 140. I was then given testogel to use for a month, got a recheck done last week and for some reason my levels had dropped even further down to 90 whilst on the gel! The endo didn't really have any explanation for this (he said possibly due to stress) and just suggested he could start me on 3 month test undecanoate injections instead. (wish I could just naturally bring them back to normal)

Do you think my severely low testosterone levels are likely to be the cause of a lot of the symptoms I've been going through?

Even though my calves are the most affected with weakness, cramps, numbness and tingling, I also have a lot of general weakness, shakiness and fatigue throughout my whole body and not just in one limb. I would say any time I do anything even lightly physical I end up feeling like I am trying to recover from some huge gym workout and the twitches then become most active in those limbs ( since they first started the twitches have been slowly travelling up from feet to calves, now also thighs and buttocks). Additionally I have been getting a lot of joint pains and aches in my knees, elbows and lower back since 2 weeks ago, even some weird buzzing sensations.

I have read that most of what I just described likely points away from anything really sinister but I still worry about muscle wasting etc as my limbs are definitely thinner these days than they where six months ago when I was strong and active.

My doc also organised for me to see the neurologist again tomorrow to see if he will do an EMG of my calves this time to put my mind at ease. (I'm just so sick or worrying)

Hopefully after hes checked my calves he will me there's nothing to worry about and to stop wasting my money and his time.

If it wasn't for the damn muscle twitching, most of us 'could this be-ers' would likely never bother you guys with our questions.

thanks
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
9,748
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Loss of muscle mass and fatigue are common symptoms of hypogonadism, yes. That you can Google.

I hope that the endo ruled out all of the numerous causes of hypogonadism, because several are worth treating on their own account. You might want a second opinion on that.
 

Connor74

New member
Joined
Feb 16, 2021
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
Hi all, I'm updating my status since two weeks ago:

The muscle twitching has now made its way from the calves and thighs, torso sometimes, and more frequently also to my shoulders, arms and even more worrying to the bottom eye lid on my left eye. I have also noticed daily muscle cramping in both my left and right calves. If I do anything even slightly physical with my body then the limbs involved explode into twitches afterwards. I know thats common with bfs but I though Ive read that the same is true with the dreaded disease.

Another strange symptom is that almost all my joints make a popping type sound every time I move them, it feels like the muscles around the joints are much less than normal and I think it also looks that way. This is in my knees, wrists, elbows, ankles and back. The elbows and knees give me so much pain and discomfort that I cant sleep well at night. (Iv'e read somewhere that muscle wasting could cause this)

Last few days I also feel like swallowing was also more pronounced or difficult than usual (like its rougher and requires more effort)

I'm obviously very worried about these changes, the eye twitching (for almost 2 weeks) and the cramping in the calves is starting to make it difficult to walk around. I'm still also getting these weird tingling or numb feelings in calves and feet.

Is it possible if it is the disease we all fear, for someone to progress this quickly? Is there anything else it could be, GBS, CIDP? I'm desperate and dont know where to go to get help with a possible diagnosis. Something is causing all this, regardless of what it is.


Also I had a second EMG two weeks ago where the technician put the EMG needle in my calf and asked me to push my foot down and to the side to tense the muscle. Well as soon as I tried to do this to muscle felt so tight and painful that I struggled to even do it. Eventually I managed to, then he put the EMG needle in my shin muscle and asked me to point my foot downwards, this time the pain was so excruciating and my muscle totally cramped up, it felt like electricity shooting through my leg. I even told the neurologist this was happening but he just said try and relax. Somehow I kinda managed to do what he said, have no idea if it was enough for him to get clear reading or not, but in the end I asked him if there was anything unusual and he said no its all fine.

I honestly feel like I dont understand how the ridiculous feelings in the legs that the EMG needle provoked could simply perfectly fine. Is this how it feels to have an EMG if you did have this disease?

Appreciate your thoughts to all this guys, I'm really struggling physically and mentally. The doubt and uncertainty, the symptoms that all seem to align so closely to the progression of such a terrible disease which we all fear, its just too much for me. I'm even seeing a psychologist who is trying to get me to change my focus but Im still not coping well.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,014
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
You still have nothing to worry about - please go back and talk this openly with your doctor as they can help you work through this whole process. Not a single symptom you have points to ALS but I'm pretty sure you know that, you are just letting fear cloud everything else. I'm not saying nothing is wrong, but that's the end of what we can help with.
All the best heading towards health again.
 

Connor74

New member
Joined
Feb 16, 2021
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
Thanks for responding, I appreciate any and every bit of help I get.

I wish I could be certain that I don't have this dreaded disease, I really do, but I don't understand why you said not a single symptom points to it.

Muscle twitching, that started in feet and slowly progressed up through the body, weakness and muscle loss, severe cramping and pain in calves and subsequent loss of normal mobility, difficulty swallowing, pain and discomfort in joints ... From everything I've read, all these are known to be associated.

I know that I have a genuine fear, how could I not, but I don't think I'm associating incorrect symptoms.

I also fear whether the EMG was done too early or something to show what's going on (it was 3 weeks ago and not all the symptoms where as apparent or severe) , I didn't even think to ask the neuro how many cases he's diagnosed with this disease etc.

I'm at the point where even my ability to work is being affected and I can't keep taking sick leave, I'm just desperate for some sort of answer as these symptoms are destroying my life.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
9,748
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
That you are unable to accept our (rather informed) perspectives, the EMG, and your exams, including multiple alternative explanations for your issues (re-read this entire thread), reflects health anxiety, pure and simple, not ALS. We could keep explaining why we know you don't have ALS, but obviously you're not prepared to accept this great news.

Please seek counseling since, as you point out, your life and work can't withstand these irrational fears. I am closing this thread. Please do not start another.
 
Status
Not open for further replies.
Top