Status
Not open for further replies.

sgtg

New member
Joined
Dec 7, 2011
Messages
6
Reason
Learn about ALS
Country
Uni
State
UT - Utah
City
OGDEN
Hello all - I've been browsing your forum for the last few days now and I am more than impressed by the volunteering of information especially personal experiences. I want to say god bless you all and thank you for helping those in a time of worry and need.

I guess I will start out with a little about myself. I'm 30 years old (31 next month), a former U.S. Marine and currently an Air Force engineer. I've been relatively physically active my entire life without much of an issue, I have been a bit sedentary up until the last month or so, only going to the gym once a week or less...

As of recently I'm starting to notice symptoms of what could be ALS, or possibly a LMN disease in general combined with a lot of other misc things some of which admittingly are a manifestation of some level of anxiety.

I am right hand dominant and did unofficially break my hand a few years back (4-5) and it did not heal correctly which has left my right hand feeling a bit off but I have gotten use to it.

I've been doing a lot of work on my car and over time (this fall/winter) I noticed that I was dropping things into the engine bay more and more especially when it got a little bit cold outside (living in Utah). Not usually a big deal I would just pick it up and move on. I then kind of realized I was dropping pills (supplements etc.) quite a bit when I took them out of the jar, didn't think anything of it and just kept on doing what I do. This is progressing into the fall of this year.

Toward the end of October I started ramping up my trips to the gym trying to get back into shape. I started with mostly cardio on the treadmill and noticed that my calves kept cramping up badly regardless of how fast I was running on the treadmill. I've tried stretching, new shoes, warming up first etc without much luck. Historically I've been able to jump onto a treadmill and run a 7:30 mile, now I'm lucky to finish under 10 minutes, not because of being out of breath but because of muscle fatigue, namely cramping on the front and back side of my calves.

Looking at my leg muscles, my right calf is about 1" bigger than my left but both look normal. I do have some larger varicose veins on the inside of my right leg and I think my blood flow down that side is slightly restricted and pools accordingly, never has been a big deal but the tone in both of my calves is a bit increased and I definitely have noticed a little bit of weakness in both legs. My bones in my feet and knees also ached.

The last 3 weeks I've mixed up my routine between free weights and cardio and I've developed eye twitching bilaterally that has not gone away even after a change in contact strength and eye drops. In fact the twitching/cramps etc has gotten much worse. I now am getting twitches, jumps etc across my body. I have also developed some mild back pain up toward the top center of my back.

My last workout was 11/29 which was a bicep/tricept workout, it did not go very well I was definitely weaker and noticed quite a bit of bone pain especially in my hands. A few days after the workout my soreness did not subside and I had significant bilateral Ulnar bone pain, stiffness and pain in all of my finger joints/wrist flexion/outside of my hand. It has been a week now and I've made no recovery, my finger dexterity has gotten considerably worse, I have issues turning locks with either hand, moreso the right than the left at this point and any pressure put on my fingers makes them ache/want to buckle, it's almost like my finger muscles have deteriorated. I am still dropping things regularly which is really starting to alarm me. My fine motor movement in both hands is definitely strained at this point and I'm having a hard time believing it was from my workout. I would say I went 75% that day and for all of this to manifest afterward would be out of the ordinary for me.


What confuses me though and from what I have read this has been a bilateral occurence with my right wrist/hand being slightly weaker than my left. I have also developed shakes since then predominately in my right arm. My muscle soreness in the upper part of my forearm still has NOT went away despite large amounts of protein intake in the last few days. There is some weird sensations up my forearm when I try to make certain movements, not really weakness but just this general nerve/tense sensation, right at the base of my wrist/hand and also up the middle of my calf and back of my leg, pressing on those locations it's definitely over sensitive.. I get the same feeling in my wrist/forearm when my wife tries to hold my hand now, it's definitely affecting how hard I can squeeze her hand, there is some weakness but not a ton, just the effort to squeeze can't be realized almost.

My eyes are still twitching today and my hands have not gotten any better, my dexterity seems to keep getting worse in both hands and my individual finger joints are still driving me nuts..

Looking back at my past, I've had a constant feeling of something in my throat/always clearing my throat especially in the last 3 months. I have had GERD type symptoms for 6-7 months and actually had a upper ENDO without any remarkable findings but the sensation still comes and goes. Two years ago I had a MS workout after a vertigo incident, it was normal minus "minimal nonspecific bifrontal white matter lesions from prior injury or inflammatory process", I was told this was not consistent with MS.

I've noticed I tend to rock on my ankles into a supinated position when standing still on both feet and also sitting down in a car/chair/couch etc this has caused the threads in a pair of my shoes and my sandals to bust out on the outside edges and rip, I have had two pairs of shoes repaired in the last 5 months because of this. I don't know how normal this postural thing is but adding all of this up its pointing to some type of muscular dystrophy in my mind. I do not have any noticeable gait disturbances. I can feel that the front side of my shin/feet do not want to lift up occasionally, especially when I walk or run, even though I wear very light shoes.

More recently, I have recently developed post urinary drip and issues with containing escaping ejaculate. I had blood tests done yesterday and had a slightly increased level of creatinine in my urine. Which has SMELLED awful lately and has been extremely foamy and very yellow, even after drinking lots of water with rest/recovery and proper diet. It tells me it is loaded with protein...

None of this bothers me minus the lack of improvement in my finger dexterity and the continued twitches/postural shaking. My bone pain in my hand has subsided a bit and so has the joint pain but my fingers to NOT feel right at all.

I have gained NO weight since lifting and my strength gains have been marginal even after starting to take creatine which should definitely make me put on 3-4 lbs after a few weeks. I am also slightly HYPOTHYROID with a TSH less than 2 points over the upper tolerance which SHOULD help me gain weight, but this isn't the case...


I have certain postural shaking in my hands when I hold them at certain angles but I do have a desk job and spend 8 or more hours on the computer everyday. I mentioned back pain too which makes this even harder to nail down.


I'm trying really hard to tie this to muscle/ligament/bone stress or possibly RSI from being on a computer so much but it's not adding up with all of these other things that have been going on.

I've had some limited neurological tests done, including Babinski Sign (no response, could feel the urge/sensation), Hoffman's Sign (again no response at all). Reflexes appear to be normal, currently. Unsure of when these things manifest in the progression of the disease.

Sorry for the rambling but I thought the more information the better...

Does any of this point to ALS? Or am I worrying myself silly here?

God bless you all and again thank you very much for taking the time to address my concerns.
 

trfogey

Very helpful member
Joined
Jan 31, 2008
Messages
2,017
Reason
PALS
Diagnosis
07/2007
Country
US
State
NC
City
Raleigh
What have the doctors that you've been seeing for the past few months say is wrong with you?

And what symptoms do you have that point to lower motor neuron problems? Given the amount of irrelevant blather that you posted here, I could certainly buy a diagnosis of carpal tunnel syndrome.
 

laurel

Very helpful member
Joined
Jul 19, 2007
Messages
1,431
Reason
DX UMND/PLS
Diagnosis
07/2007
Country
CA
State
BC
City
Vancouver
A referral from you GP to a good neurologist to have an EMG and nerve conduction tests with the view to ruling out Carpal Tunnel or something autoimmune like CIDP would probably be a good step. Nothing sounds like ALS from what you are describing. Good luck.
Laurel
 

sgtg

New member
Joined
Dec 7, 2011
Messages
6
Reason
Learn about ALS
Country
Uni
State
UT - Utah
City
OGDEN
Ok I'll simplify a bit. Sorry for the blather.

+bilateral fine motor issue, right worse than left, dropping things etc
+Right index finger has drifted from middle finger and now has a gap 3x bigger than my left.
+muscle cramps, weakness, twitching, bone and joint pain
+increased muscle tone both calves, right 1" bigger

Carpal tunnel not likely pain can't be felt anywhere in the wrist by tapping, doctor tested no issues.

To the 2nd poster thank you. Autoimmune could be a possibility I have sudden hearing loss on my right side now for going on 12 years.

I have an EMG lined up with a Neuro next week. Still worried sick, my right hand seems to be getting worse...
 

Ms. Pie

Very helpful member
Joined
Mar 26, 2011
Messages
1,794
Reason
PALS
Diagnosis
10/2010
Country
US
State
CO
City
Colorado
You might have a uninary tract infection. Your other symptoms don't sound like ALS. I hope you find out what it is and can get it fixed! Good luck!
 

trfogey

Very helpful member
Joined
Jan 31, 2008
Messages
2,017
Reason
PALS
Diagnosis
07/2007
Country
US
State
NC
City
Raleigh
+bilateral fine motor issue, right worse than left, dropping things etc

Other than dropping things, what do you mean by "bilateral fine motor control issues"? Are you aware that a bilateral presentation points away from ALS and toward issues in the cervical spine, especially when the motor control issues are accompanied by pain?

+Right index finger has drifted from middle finger and now has a gap 3x bigger than my left.

Hate to say this, but that's the craziest symptom I've seen anyone report here. Is there any problem moving that finger? If not, what possessed you to measure such a thing?

+muscle cramps, weakness, twitching, bone and joint pain

Muscle cramps and twitches are very common, especially in people who are physically active and work out. Bone and joint pain are not related to ALS, which is a disease of the motor nerves and has no effect on the sensory nerves. The joint pain associated with the later stages of ALS occurs after the muscles around the joint have become paralyzed and unble to support the joint properly, leading to stresses on ligaments and tendons that become painful. Do you have paralysis in the muscles around the joints that are aching?

And could you give us a bit more detail about what you mean by weakness? Has a doctor told you that you have clinical weakness in a particular muscle or set of muscles?

+increased muscle tone both calves, right 1" bigger

Increased exercise should lead to increased muscle tone -- that's one of the points of doing the exercise, isn't it? And a one-inch difference in size between the left and right calf -- very common because of the natural asymmetry of the human body.

Carpal tunnel not likely pain can't be felt anywhere in the wrist by tapping, doctor tested no issues.

The gold standard test for carpal tunnel syndrome is a nerve conduction velocity (NCV) test. And there are places other than the wrist where those nerves can be impinged or entrapped. You'll get a better indication when you have your EMG next week (an NCV should be done as part of the EMG).

I note that you still haven't said what the doctors that have examined you recently have told you might be causing your problem. It seems very strange that one doctor would refer you to a neurologist for an EMG without giving you some indication of what he suspects is going on. Maybe you could fill us in on those important details.
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
Your sensory issues and pain lead more toward trapped nerves somewhere. It's possible your cramps are over-exerting those muscles.

Maybe your doc can do an MRI torule out the most common thongs first. Al's does not affect your kidneys. If your fluid intake is normal, strong smelling urine can mean kidney issues.

Let you GP work you up. You have many issues rhat point away from als and more toward metabolic.

Good luck-- and stop measuring! That's a definite sign of obsessing and will lead your doctors to listen less. Nothing in your posts says what the doctors think.
 

sgtg

New member
Joined
Dec 7, 2011
Messages
6
Reason
Learn about ALS
Country
Uni
State
UT - Utah
City
OGDEN
Your sensory issues and pain lead more toward trapped nerves somewhere. It's possible your cramps are over-exerting those muscles.

Maybe your doc can do an MRI torule out the most common thongs first. Al's does not affect your kidneys. If your fluid intake is normal, strong smelling urine can mean kidney issues.

Let you GP work you up. You have many issues rhat point away from als and more toward metabolic.

Good luck-- and stop measuring! That's a definite sign of obsessing and will lead your doctors to listen less. Nothing in your posts says what the doctors think.

I understand, I'm just very worried and it's put a lot of things in perspective for me, which hopefully can be a good thing. Metabolic wise my panel was good in my blood tests. Slightly low K and slightly Hypo but doc said it would not be symptomatic. Standing by for my EMG and other Neuro workup stuff next week.
 

sgtg

New member
Joined
Dec 7, 2011
Messages
6
Reason
Learn about ALS
Country
Uni
State
UT - Utah
City
OGDEN
Other than dropping things, what do you mean by "bilateral fine motor control issues"? Are you aware that a bilateral presentation points away from ALS and toward issues in the cervical spine, especially when the motor control issues are accompanied by pain?

I feel weakness and a sensation dont know how to describe it...kind of like restless leg syndrome or the like, accompanied by weakness and shaking. Picking up pills with either hand has been a struggle, my left hand feels like it has gotten a bit better though. It's like they just don't want to do it. I can definitely feel the sensation when holding a cup of coffee, especially in my right hand.

If I grabbed the coffee cup and tried pouring it out I get a sensation at the base of my wrist and my hand wants to shake. There is also sensation/weakness feeling when holding a fork, turning a key in a door etc. It has been primarly bilateral but my left hand seems to be a bit better. I am right hand predominant though.

I also want to note that I have had small raised red nodules on my knuckles of my right hand mainly on the middle knuckle worse distal than proximal. I thought initially this was dry skin but after weeks of lotion and neosporen they still remain. Reading around on the internet this is associated with some types of muscle atrophy, not sure what it would be caused by. There are some on my left knuckles but it's largely my right hand.

Hate to say this, but that's the craziest symptom I've seen anyone report here. Is there any problem moving that finger? If not, what possessed you to measure such a thing?

This is why I mentioned the distance between my index and middle finger on both hands, my right hand index and middle fingers have a noticable gap if I extend my hand out like I'm grabbing a basketball. Trying to move my index finger inward to touch my middle finger generated weakness and shaking. It's just an observation that I made. I've heard the term rhabomyolosis and dermamyositis and on that note I am making an appointment with Dermo as well. My hands were exposed to rather unkind car chemicals preceeding this so I guess anything is possible.

Do you have paralysis in the muscles around the joints that are aching?


No I do not have paralysis surrounding the joints and ligaments where the pain is located. I still feel joint pain in a lot of the finger joints but the bulk of it has subsided but the weakness and stiffness remains.

And could you give us a bit more detail about what you mean by weakness? Has a doctor told you that you have clinical weakness in a particular muscle or set of muscles?

I guess the weakness is that sensation I was describing, like I'm moving through water almost, especially with fine finger movements. The door opening, turning keys, the coffee cup thing all produce this sensation and sometimes light shaking. The sensation I can feel in the base of my wrist and in my forearm. Certain movements cause my fingers/thumb to extend because they don't want to support the weight.

No I have not been diagnosed with any clinical weakness. I'm referencing my own baseline for strength. I have yet to see a neuro, my primary care has incidated it could be cervical in nature or possibly ulnar/median nerve issues or basically tendonitis, or a combination.

I have had blood work done in the last week, the only thing that was remarkable was my elevated Creatinine levels.

I've also had my entire back X-rayed without any signs of disc damage or degenerative signs, I do not think that can rule out the cervical spinal issues though.

I had something interesting happen yesterday when I was at the grocery store with my wife that may be worth noting. I was rotating my shoulder around and I noticed some discomfort on the front side, simultaneously I sneezed hard and I felt this AWFUL pain and tingling shoot down my arm starting in my right shoulder, it resonated for a 20-30 seconds then went away.


Here is the primary reason I'm worried about this presentation... I have been taking a stimulant for my ADHD for 8 months now, slow release Dexedrine (Dextroamphetamine) (10 MG, 2, 3 X a day) recently I've been back in the gym, which has also got me back into eating protein and taking some supplements, particularly L-Glutamine, in very low doses post workout.

I did NOT realize that L-Glutamate is in the list of items you should notify your doctor you are taking when taking Dexedrine or any other stimulant. Reason being is stimulants already cause brain cells to uptake more glutamate than the normal person which in addition to taking L-glutamine could result in something...what that something is it does not say on my precription paperwork nor has it been divulged by any doctor I have seen. I would consider the amount of glutamine I consumed very trivial but my sugar intake as also increased quite a bit when these events started. I've also read that in conditions like ALS, Parkinsons, Huntingtons etc there is an increased level of Glutamate in the cells in the Cerebral Spinal Fluid, which tells me that in the unlikely chance I pushed too much glutamate into my cells I could have done damage.

I do not know or want to hypothesize on how this would manifest but it would be some level of spontaneous, induced form of motor neuron damage, which I have heard has existed in cocaine users and others taking large dosages for extended periods of time...not my case here.

I am still worried nontheless.

The blepharospasms I've been having on a regular basis have been bilateral under both of my eyes, they preceeded my muscle cramps/joint pain/weakness by a few weeks. They all started around the time I was supplementing my workouts with Glutamine as well. I've been off of my medication and the supplements now for a few days and generally feel like crap like I should.

I just hope I didn't start some irreversable process that I will forever regret.

Still very worried about this and how it's presented. I will be getting the EMG/ECV next Tuesday, Neuro is Monday, MRI Wednesday. Very anxious...
 

trfogey

Very helpful member
Joined
Jan 31, 2008
Messages
2,017
Reason
PALS
Diagnosis
07/2007
Country
US
State
NC
City
Raleigh
Essentially, sgtg, there's nothing in anything that you've said here that points toward ALS or any other motor neuron disease, at least in my opinion. The typical MND starts in one isolated area of the body and spreads from there. Once symptoms start, they continue until the muscle is paralyzed. As we say often around here, ALS symptoms don't come and go, they come and stay, permanently.

There are a set of symptoms that appear together when motor neurons are being attacked. You aren't showing these symptoms. So, count your blessings and relax. Also, you may want to consult more closely with your primary care physician before you start an ambitious physical training program in the future. Bodies don't respond the same way after age 30 as they do prior to 30.

Good luck to you.
 

TedH5

Very helpful member
Joined
May 17, 2010
Messages
1,142
Reason
PALS
Diagnosis
08/2010
Country
US
State
GA
City
McDonough
First let me thank you for your service to our Country.

You have written a lot here and I must have ADHD this evening (lol) so I will admit I did not read every word you wrote. That being said from what I have read and you have descirbed it does not sound like ALS.

I would follow through with your Neuro appt and let them determine what you have going on.

In the meantime please put ALS out of your mind.

Good luck
 

sgtg

New member
Joined
Dec 7, 2011
Messages
6
Reason
Learn about ALS
Country
Uni
State
UT - Utah
City
OGDEN
A little bit of an update on my progress here. My weakness/fine motor has not gotten any better, in fact today it seems to be a bit worse. Picking up a coin with my middle finger and/or my index finger seems to be more difficult in my right arm. I do not know what a facsiculation feels like but I do not have anything during the day that feels like something crawling under my skin. I definitely can feel a sensation at the base of my wrist and the top of my forearm but I'm not sure if it would be considered a fasiculation I suppose but it's not a constant sensation, it is accompanied by weakness issue is I can feel it in both forearms.

I have tried pressure/icing all parts of my wrist/hand without success. I do feel like the weakness is moving up from my hand, to my wrist/upper forearm and I can feel a similar sensation at the rear side of my shoulder.

My muscles do cramp up rather quickly when I do try to use them I'm not quite sure what to attribute that to either.

Last night I woke up to my pinky and ring finger twitching on my right hand where most of my motor issue had started, I also have noticed that when my hand falls asleep and wakes back up there isn't a tingling sensation in that part of my hand, rather it moves from asleep to awake, transitioning through the typical weakness that happens but without the tingling.


Lab data:

I had my CPK levels checked last week and they were 99 IU/L, with a reference range of 39-308, not sure exactly if this should be reassuring. My understanding on how this disease works it would make sense that CPK levels may not be elevated early on, is this a true statement?

Does the muscle atrophy precede weakness/inability or does it follow? What is the delay between weakness and fasiculation? Any input would be appreciated...


ALK Phos is on the low end at 52 IU/L (50-136) and AST at 15 IU/L (15-37).

I had some more blood drawn today to check for inflammatory markers, vitamin B12 and B6, Magnesium and Vitamin D.

I have an EMG tomorrow with an MRI on Wednesday which should ultimately give me some answers, or possibly just more questions. My anxiety level at this point is through the roof, especially when I keep wanting to forget about my weakness and move on but it is not letting me. Although the reassurance helps I am still not convinced I do not have other

It's hard for me to accept overtraining caused sudden onset of muscle weakness, loss of motor control, joint pain throughout the body etc.
 

sgtg

New member
Joined
Dec 7, 2011
Messages
6
Reason
Learn about ALS
Country
Uni
State
UT - Utah
City
OGDEN
Is the base of the wrist a key point of this disease? Majority of my issues seem to be arrising from this area at this point.
 

Ms. Pie

Very helpful member
Joined
Mar 26, 2011
Messages
1,794
Reason
PALS
Diagnosis
10/2010
Country
US
State
CO
City
Colorado
Mine started in my right hand fingers. Everyone is different. Your EMG will tell you if you have cause to worry about ALS. My guess is that you do not have cause.
 

trfogey

Very helpful member
Joined
Jan 31, 2008
Messages
2,017
Reason
PALS
Diagnosis
07/2007
Country
US
State
NC
City
Raleigh
Is the base of the wrist a key point of this disease? Majority of my issues seem to be arrising from this area at this point.

No, it isn't a key point in ALS, because the nerve cells being attacked by ALS and the other MNDs are in the brain and in the spinal cord. The fact that your issues appear to be arising from there is yet another in the list of clues that point away from ALS.

You aren't doing yourself any good with this anxiety. Let your doctors do the diagnosing -- you are far too emotionally out of control to be poking around on the I n t e r n e t for medical information.
 
Status
Not open for further replies.
Top