More symptoms occuring, can ALS progress this fast?

[terrif1ed]

Hey all hope everyone's feeling better than myself...

So my initial complaints I posted seem to have been progressively worsening... I'm a realist and at this point am pretty much coming to terms with the fact that it is very possible I could be suffering from ALS.. I've been in denial about the tiny fasics, chalking it up to pulses in odd places (lol yeah right) because the twitches are very rhythmic and constant. But it seems the deeper I look, the more I find, and the more I become consumed with depression and hopelessness. I stood on my tippy toes and checked my calves out in the mirror for the first time and my right muscle is definitely less defined and bulky than my left, My husband actually saw the difference before I did (and I am right side dominant by the way so if anything this would be less scary if the atrophy was in my left calve but no). I've been dealing with SEVERE daily fatigue, I feel like I need 2 huge cans of redbull just to get me through the day - actually that was my initial complaint to my GP 2 months ago... I'm just so tired and run down. The fatigue has been bad for months possibly even years but seems to be worsening (I can sleep for 10 hours straight, AND still not wake up refreshed... I sleep so deeply and for so long and it does not correlate to strenuous activity). I know at 24 I just should not be feeling so depleted. Is fatigue a common finding in ALS? I've had millions of cognitive symptoms for many months, some years, which I never could attribute to anything specifically. Which include:

Daily Chronic Fatigue
Brain Fog Daily
A.D.D like forgetfulness
No short term memory
Confusion/Head always feels overwhelmed, scrambled
Inability to multitask (ex. cannot listen and interpret what’s being said to me if I’m doing something else.. I always zone out)
I’m becoming Dyslexic
Dull headaches in forehead (especially with changes in weather)
Mood Swings/ Easily angered
Hair Loss, Progressive Thinning
Stiffness
Creaky/Popping Joints Everywhere
Heart Palpitations
Severe Cold sensitivity & Hands, Feet always freezing to the touch.

My newer symptoms are now the twitching, weakness, atrophy, stiffness and sensory sensations in my hand.

I've also been dealing with stiffness in my legs, neck, shoulders, hands... basically all my limbs just feel *tight* and so inflexible.. I can barely straighten my legs completely (barely) without the stiffness and burning behind my knees... All my joints crack & pop when I bend or try to stretch.. I feel like an old lady. More recently my right hand has been constantly burning, in wave like sensations, not my pulse but it's a very odd feeling and almost feels electric. I can see the pulsing in both my palms but don't feel it. Because of my vague Lymes diagnosis (Positive ELISA + one band on western blot, but still awaiting Igenex results) I know of course this is a factor - and I'm willing to pursue treatment in hopes that Lyme's is the culprit all this. But between the atrophy and twitching I just feel so hopeless. I cannot believe how many PALS have tested positive for Lymes, It's crazy, I know this subject has been beaten to death but I mean...There's obviously a connection right? Why do some people treated for Lymes who have been diagnoseded with ALS get better - and why do some get worse? It's just so baffling. Can anyone post their experiences with Lymes/ALS? I did a search and read many posts...most of which broke my heart to read.. People sounding just like me with high hopes of treating the Lymes and getting better only to inevitably fail. My husband hasn't been supportive really at all, even though deep down I see he's scared too but won't show me. I haven't confided in my family because I don't know how to tell them... I know they'll just be in denial anyway. Ironically my anxiety is non existent, I've pretty much passed that point and now just feel emotionally numb. I'm miserable and having thoughts I shouldn't be having...Thinking of ways OUT.. It's terrible.

I want to be positive and I'm trying so hard to be strong but It's hard for me to laugh, smile, or think about anything other than this... I really admire the strength of PALS going through this, and I want to learn to be positive and make the most of life as well (as anyone should do anyway) but I'm having such a hard time coping with my new reality. I haven't had an EMG yet but I know what the results will be...I see the constant twitching, I see the atrophy and I feel the weakening - I don't need a test to confirm this reality, but I do need hope, and strength to cope. I want to be strong but I don't know how... I think about that quote that god doesn't burden you with anything you can't handle and overcome...and then I think wow, he really doesn't know me at all because I'm not that strong.

 

[hopingforcure]

You are absolutely anxious, you say your not, but you surely are. I wil first tell you this: You do not have any reason to be sure you have ALS at all. So much has to be first ruled out before ALs could even be considered. I can tell you that thankfully I have personally seen and answered hundreds of posts just like yours, and have not seen many, if anyone diagnosed. with ALS. You are young, you have not even had an emg. let alone all the blood tests, mri's ect to rule out a ton of other things. Sounds a lot like thyroid, connective tissue issues, a ton of other things. Relax, make an appoitment with a doctor.

 

[rcharlton]

Your symptoms really don't sound anything like ALS.

Have you been tested for West Nile?

Good luck

 

[notme]

Hon--we've all tried to tell you that your symptoms just do not fit ALS. It doesn't cause:

Brain Fog Daily
A.D.D like forgetfulness
No short term memory
Confusion/Head always feels overwhelmed, scrambled
Inability to multitask (ex. cannot listen and interpret what’s being said to me if I’m doing something else.. I always zone out)
I’m becoming Dyslexic
Dull headaches in forehead (especially with changes in weather)
Mood Swings/ Easily angered
Hair Loss, Progressive Thinning
Stiffness
Creaky/Popping Joints Everywhere
Heart Palpitations
Severe Cold sensitivity & Hands, Feet always freezing to the touch.

NONE of the above. Seriously.

Definitely something going on with all those symptoms. Chronic Fatigue Syndrome. Lyme. Fibromyalgia, Auto-Immune SOMETHING is entirely possible.

I don't understand why you are fixated on ALS. ALS causes progressive clinical weakness and atrophy (noticed by a doctor--not you or hubby)

If you're sleeping 10+ hours a day at 24-- get off the computer and go to a real DOCTOR that can help you deal with the physical issues and the massive depression you're dealing with.

 

[Alastor M]

Have you tried seeing if you have an intolerance to gluten? Lymes has been known to manifest itself as Celiac Disease, which causes all the symptoms you have described and many more. The neuropathy would more likely be due to Lymes though.

 

[Alastor M]

And even if your issues are not caused by gluten, abstaining from it will STILL result in you feeling better 80% of the time . You've got nothing to lose.

 

[terrif1ed]

Thank you guys for the quick and helpful responses. I agree my long term symptoms are definitely not ALS type symptoms, and maybe can be attributed to the Lyme I probably had for many years unknowingly (I was never tested until a month ago yet I have had most of those symptoms for years). My new symptoms such as the twitching and atrophy are the alarming ones. My gp suspected thyroid issues as well but everything came back normal - only abnormalities on my labs are the positive Lymes titer and high white blood cell count. And no, haven't been tested for west nile but I of course have been bitten by mosquitos a million times over, people would always say I have sweet blood because I'm such a magnet for em, heh.

And I went to a neuro last week and she did some standard in office tests..I have brisk reflexes but no clonus and negative babinksi. She did discover however that I have primitive reflexes, which are normally only present in infant hood.. They say these reflexes can re-appear from UMN damage. Now I don't know how long I've had them, who knows if they've always been there but the general consensus is it is abnormal to have em after 1 years old. I have an MRI scheduled for next week. I'm just having a hard time believing my newer symptoms are lymes.. Of course in due time I guess I will have my answer but I'm just trying to prepare myself for the worst, yet hope for the best. I am definitely depressed, recently started smoking again after having quit for months, and I'm isolating myself. I need to find a way to come out of this (whatever it is) with a good attitude, sometimes I really feel like ignorance is bliss and I would be so much better off without the internet; but ofcourse I can't erase what I've learned, although I wish I could. I don't want to feel like this anymore its such a terrible feeling in my heart. Anyway, regardless I am thankful for this board and for you guys - just having a source to vent and get everything out is invaluable to me, so once again thank you guys.

 

[terrif1ed]

Alastor I vaguely remember doing light research on Celiac when all this started but of course forgot everything I've read about it.. but I think I remember it causing a lot of gastro/stomach issues? Which I don't have. Excuse my ignorance if I'm wrong though.. What foods are gluten heavy?

So is the sleeping so many hours straight with no energy/constant fatigue a common occurrence in ALS? I know its such a vague and common symptom and can be caused by a million things but sometimes its hard to distinguish "muscle weakness" from general fatigue/tired and stiff muscles (which is what I have).. Or are the two interchangeable?

 

[Alastor M]

It depends on how Celiac affects you. Symptoms can vary from entirely debilitating, to no visible issues whatsoever. It has been known to affect ANY system in your body....and was even mistaken for ALS in several patients.
FATIGUE is the MOST COMMON INDICATOR of an allergen or intolerance running rampant in your body.

 

[twinmommie72]

You need the EMG which you refuse to get...

 

[terrif1ed]

WBC has been between in the 12,000-13,000 range, which I guess isn't that bad.. But still I don't think its normal. Wow I always get jittering legs also when I do the tip toe thing, they lightly bounce involuntarily. I didn't think this was clonus because that's not how they test for it, and she tested for clonus the typical way with the ankle flex and that didn't cause it.. But on my tip toes while sitting I'm definitely getting a lot of movement stemming from the foot. Really weird. No color changes with the coldness.. I'm on my berry but I'm gonna check your album later from the computer. I really hope you find some answers as well, and ofcourse pray for both of us that this is not ALS.

Twinmommie - I'm not refusing it and have come to terms with the fact that if I want answers I will need to have this done.. You should know as well as I do though that nothing in the medical community happens overnight. Between obtaining pre certs from my insurance company and having necessary bloodwork before I can do anything it has taken me a month just to have the MRI. I don't anticipate the EMG scheduling will be very different but I know that's the next step..

 

[Alyoop]

Clonus with pressure, can be a common and normal thing for some people, be careful not to read too much into it. My 18 year old daughter gets it sometimes if she pushes down on a foot. I used to get it in my arms if I pushed on something after a gym workout when my muscles were really tired.

 

[notme]

My legs don't 'lightly bounce' they go nuts very painfully. And I'm not even sure if "I" have clonus--other than by videos I've seen of it.

I just don't know what to say to you--everyone here has shown you all the reasons WHY ALS isn't likely at all--and you still persist.

NOTHING in your symptoms sounds like what I'm dealing with--or what I've read from PALS here. Even the atrophy in my hands doesn't mean that I have ALS---they might find that I've got pinched nerves in both arms.

The other person commented from your thread where you said you won't have an EMG--which is the only way to definitely diagnose you--and even THEN--only after other things are ruled out.

With your list of symptoms though--they won't even be looking at ALS, I don't think.

 

[terrif1ed]

You know, I wish I was making this stuff up. Now what's happening is episodes where my throat feels like it's closing up and it's difficult to maintain a conversation without feeling like I'm straining to get the words out... I don't know how to describe it but for the past week this has occurred almost every evening... Like I start off normal but as the day progresses my voice becomes weaker because of my throat tightening up. This is all happening so fast... Don't think it's stress related because it's not like I'm having daily panic attacks, This tightness just comes on out of nowhere and sticks for awhile. No problems eating, drinking or anything that I have noticed but the throat closing feeling is scary. If this is ALS it seems to be progressing so fast and now with the bulbar symptom in addition to the leg issues, I don't get it.. I thought ALS was supposed to begin in one region and slowly spread.. Yet it's like I have bulbar onset AND limb onset, with all my als symptoms coming on within weeks... It's just too much to absorb, too fast. I really hope they find something to explain this on my MRI..

 

[Alyoop]

Well it's not ALS and you have now entered the very common phase of the over anxious, the " feeling of your throat closing" . Always seems to come along. It's just anxiety. ALS does not work that way. Things never improve, never on and off symptoms. Once the nerves denervate and muscle disappears there is no going back. You have no weakness anywhere, just a few cognitive issues. Why you have linked them with ALS I have no idea.

You can go to a neuropsychologist to have cognition tested if you are really worried, but leave the ALS rubbish buried.