Hi Everyone!

[Arsesnal]

Hi Everyone!-Heat Intolerance

Kindly help me with understanding this illness. I have symptoms that i have been describing to my PCP and Neurologist who just seem to think that i am a anxious/hypochondriac person.

This all started with symptoms of vertigo in September 2015 and i attributed that to arrhythmias, Inner ear imbalance. Visited both heart specialist and ENT who said both were in good shape. Vertigo kept continuing and then after a trip back from Florida i developed heat intolerance and in summer i could not step out if it was more than 80 degrees and i would feel dizzy and my legs felt clammy.

And then came on the twitching and fasciculations when i looked up my symptoms on the WebMD site. It said it could be MS or ALS. First visited a MS specialist who did the usual neuro test in his office checked my reflexes and all and he said my reflexes were normal. But he also ordered Brain, Spine MRI and a spinal tap. All of which came back negative in August 2016. In the meanwhile i kept on playing and working out since there was no definite diagnosis and my PCP put me on Klonopin.

What's interesting is that i kept getting flares and i thought i had UC or IBD and i had lost 10 pounds in the meanwhile and my arms and legs look a bit smaller as well. So i visited my neurologist again and he did the neuro test and he said my reflexes were in the normal range and i told him about atrophy and such and he said he cannot see any. I am not sure if am the one who is out of his mind or the neurologist and PCP who keep saying that it is all obsessive neurosis! Why not send me for an EMG/NCV is what bothers me.

I am able to eat, walk and speak well but my exercise tolerance has gone way down and at times feel like my arms and legs are spassing. Any advice would be appreciated. Please do not write me off as a guy as"look at this crazy guy".

Just need some guidance from you. Really appreciate it.

 

[ShiftKicker]

Hi Arsenal-
I've moved this post to the DIHALS sub forum. I recommend you check out the "READ BEFORE POSTING" section in this forum. It may have the answers and information you need.

 

[Arsesnal]

Hi Arsenal-
I've moved this post to the DIHALS sub forum. I recommend you check out the "READ BEFORE POSTING" section in this forum. It may have the answers and information you need.

BTW thanks for correcting my handlename..don't know how it got spelled as Arsesnal...i definitely meant Arsenal!

 

[Arsesnal]

Question i mainly have is Heat Intolerance one of the main symptoms of ALS because it is for MS. Has any of the dear folks with ALS experienced heat intolerance before getting diagnosed. I have not seen information on this on the DIAHLS stickies.
So kindly help!

 

[lgelb]

Heat intolerance is not typically a presenting ALS symptom and if MS was ruled out via MRI/exam, usually points to something more systemic than neurological. So I would see a second internist if your symptoms are interfering with your daily life. Meanwhile, Klonopin can make weakness and dizziness worse so if you're still taking it, I would ask while you're there about tapering off to see what happens.

Best,
Laurie

 

[Arsesnal]

Thanks for your kind reply Laurie,

I want to add that i have had muscle twitching ever since i was a teenager but it was confined to my eyelids and sometimes in the calf and thigh but nothing that compares to what i have now. Ever since i came back from the Florida trip and i realize i could not take extreme heat anymore i checked for symptoms and it said MS and i got scared and contacted my PCP who simply waived it off as Vit D deficiency.( I was deficient) but i worried about it so much that it open the floodgates of twitching/fasciculations. Once the MRI and lumbar test came back negative. The neuro asked me to check back with him after 6 months which i did and he performed the neuro tests for reflex and strength and he said the reflexes were normal but he asked me to do an MRI again to see if the flareups i was having is related to MS. I asked about EMG/NCV and he said not needed now only after MRI only if needed. Sometimes i feel like if it has to happen it will and my PCP said "you seem like you want to have it and always think of the extremes". He also asked me to taper of the Klonopin and see if that helps! Honestly i do not want to take any drugs and if i have to live with pain and stiffness here and there i will have to do so. But i appreciate your feedback...
Thank you!

 

[Arsesnal]

Also wanted to add a few other symptoms that i forgot to mention earlier.
I have tingling and numbness in my hands some times and while sleeping as well.
I developed floaters when i was out on a hot day and felt some discomfort in the eye and the next morning i woke up i was like what are these things in my eye.
Do folks with ALS experience flares? When i have a flare i have pain in my ribs, itchiness and some pricking sensation at random parts of my body.
It definitely feels like an alien parasite has invaded for which i have no diagnosis. Only thing that keeps occurring every now and then is the twitching across the body and the feeling of fatigue once in a while and feel like i am losing muscle mass. Sorry my symptoms are all over the place. I think i need to find a neurologist who can do the EMG/NCV but that is hard because my current neuro keeps dismissing that i have symptoms of ALS. It is really frustrating.

 

[codyclan]

If your current neuro says no ALS, why are you so focused on ALS? What does the neuro think it could be. By focusing only on ALS, you are limiting a doc's diagnostic focus. He says no ALS, we say your symptoms don't present like ALS--so go to the doc and ask him what else could be causing your symptoms. Truly, I don't see ALS in your description--at ALL. These are all sensory and no, 'flares', are not associated with ALS. Once you loose function, it doesn't come back in ALS.

If you don't trust your neuro, by all means go to another or ask for a second opinion, but don't ask "is this ALS?" , present your symptoms and ask "What can this be?".
Tracy

 

[Arsesnal]

Thank you Cody,
Don't mean to drag this on any further and the folks here are amazing given their many difficult situations. I think you are absolutely correct...rather than focus on a specific disease i should be a bit open minded about the fact that there could be other factors in play here as well. My PCP is pretty much useless since he thinks i am making up my symptoms and i am at a level that only psychiatrists can help..Obsessive Neurosis he calls it. I am the last person who want's to be bothered or bother someone else with my symptoms but being in limboland puts me in a mental state that can't ignore every single new symptom. I have even told him about my flares, weight and muscle loss, numbness etc and he says we have done several tests but nothing is indicative that clinically that you have a nervous disease. I can't sleep well at night and have to depend on Klonopin which i have to wean off and god knows how i am going to sleep again
When you are scared/anxious and often keep thinking the worst case scenario you can't think clearly as in my case. But i thank you for your time and sensible advice.

 

[ShiftKicker]

I'll pile on here and say, go and see a psychiatrist. I can not recommend it enough. One that specializes in somatoform disorders preferably. Not only will a psychiatrist be able to support you while you search for answers, they may be able to provide valuable insight into whether your body is responding to stress or if there's is a physical reason for your symptoms (or a combination). Psychiatrists are medical doctors with extra training in psychiatry. There is no shame in seeing one.

 

[Arsesnal]

Thank You Shiftkicker,
You echo the same thing said by my PCP/Neuro to fix an appointment with a Psychiatrist and explain your many symptoms and he/she can put things in perspective as to how the brain works and test for OCD/Depression/Bi-Polar etc.
appreciate your time!
kind regards

 

[Atsugi]

Arsenal, I read all your posts very slowly so I wouldn't miss anything. There is one thing I missed, though: ALS. You didn't say anything that would point to ALS.

In fact, what I saw was a perfectly normal person in normal health whose body does normal things, with one exception: your decision process is NQR. Not Quite Right. I, too, recommend seeing a psychiatrist because they understand how the mind rules the body, and how chemicals move the mind. This is important because, if left untreated, this problem could ruin your life. Good luck.

 

[Arsesnal]

Mike,
Thanks for taking your time to respond to my post! Greatly appreciate it. When it gets too hot or cold i feel that my legs get gimpy/stiff/rubbery and my fingers go numb while sleeping(cause of waking up). But during the day they work fine. So my head is in a mess. My symptoms seem so disconnected.
Twitching, weight loss, IBS, heat intolerance, insomnia, flareups, tingling and numbness, appears to be loss of muscle(in the back and thighs), neck and back pain. All over the place and the PCP says ANXIETY and prescribes Klonopin and now i have to taper off that as well. My Neuro wants a repeat MRI and when i told him could this be ALS? He looked me straight in the eye with a smile...no you don't have ALS and i pressed him on a EMG/NCV and he said he does not see a reason to since i passed the Neuro test. Now my immediate challenge seems to overcome Klonopin withdrawal which was initially prescribed so i can sleep without anxiety and sleep through muscle twitches. What an irony!

 

[Arsesnal]

I do have to say one thing over the past few years i used to be very active and train for stair climbing (American lung Association charity) swim& workout everyday and play volleyball and badminton over the weekend for 4 or more hours. Now i am just chilling out afraid that if i put any more stress on my muscular system i may end up in the hospital. Maybe i stressed out my body way beyond of what it was capable of handling and could have an auto immune related disease that is taking over.
Because what else explains a healthy person to drop of a cliff mentally and physically.

 

[Arsesnal]

I do have to say that being in limboland is not great and just the fear of the unknown element makes me want to look at my body and think it is deteriorating everyday.
The neurologist and the PCP don't think i need an EMG and referring me to a psychiatrist..while i am looking at parathesias, dents, muscle loss, bad sleep everyday. I believe having a job that is required of me to work on the internet is a major trap. Whether i have it or not i certainly developing this mental illness called fear which is debilitating to say the least. I am kind of embarrassed since folks here are actually dealing with the issue first hand. One doctor told me mind is a powerful thing and it can be your friend or your worst enemy.