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thompsonds3

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I'm going to start this by saying what I'm experiencing today, physically, how I feel, right now.

I have diffuse, wide spread, constant fasciculations. I get them in my feat, calves, quads, gluts, back arms, eyelids as well as my tongue.

I feel weakness all over my body. As well as general fatigue. I have my most considerable weakness in my right hand effecting grip as well as in my lower leg, calf muscle. It makes dorselflexing difficult to say the least. I feel like my foot is dangling at the ankle joint with a dull achiness at the joint at the top of the foot. I cannot run for more than a very short distance.

Most of my symptoms have been distal, but in the last month and a half they have moved into proximal muscle groups effecting my hips and shoulders. Lifting a glass full of water is taxing on my shoulder.

My upper leg and buttock muscle seem to have weakened. Getting up from the sitting position and walking up stairs have become noticeably more difficult and tiring.

My muscle ache. In my hands in particular. It's not a cramp where there is a bump or a seized up feeling. Just a deep ache in the hand muscles.

My shoulders ache as well as my hips. I seem to be having issues with my IT band on my right leg, which makes the outside of my right knee feel achy and painful. Right knee joint feels unstable.

My joints, especially my finger joints feel like they are being loosely held in by their supporting muscle. I feel compelled all the time to crack them, like I'm putting them back into alignment.

I'm having issues with taking short breaths. Sometimes it feels like a slight constriction forms in the back of my throat and I make this quick almost snoring like sound. Then I just start taking deeper breaths for a few moments and it feels a little bit better. This along with the tongue fasciculations in very disturbing to me.

In general, normal everyday tasks have become more difficult. I fatigue more easily when I hold on head up while lying down, holding my cell phone in my hand at an angle exhausts my forearm, any repetitive motion like scraping paint off a wall fatigues that muscle area abnormally quickly.

I turned 30 years old April of this year. My symptoms started December 22nd immediately following a flu shot. I hesitate to include this part of my story, because I've learned that its not much of a conversation starter with most healthcare providers, but it's the truth and I'm not backing down from that

I had the shot and within a few hours started feeling pressure building in my forearm and bicep right around the joint, by the next day it had traveled down my arm into my hand effecting dexterity. I was so baffled by what was going on. I was having difficulty typing and taking money out of my wallet. I was fumbling with a computer mouse and the POS system at my work. That night I felt a this sort of odd sensation in my knee joint and that was when the twitching started.

This spread through my body as a feeling of sort of numbness and tingling. Not a numbness that created a loss of sensation, but a sort of numbness is the only way I can descripe this. Within a weak I was experiencing this sensation in all of my extremeties. My muscles were so tight I was getting any overwhelming need to stretch them constantly.

The fasciculations weren't the number one concern in the beginning, but within a month or so they were very noticeable and happening mostly in my calves and feet. They happen everywhere now. The tingling and numb sort of feeling that never created a loss of sensation to touch or vibration eventually disapeared all together...... I'm now left with weakness predominantly on the right side of my body that is most prominent in trying to squeeze with my hand, in and around my right knee joint and my muscle responsible for dorselflexing. As well as stiffness and weak feeling in my shoulders and hips. The breathing thing and of course the wrapping paper of everything else would be the fasciculations.

I feel like today at this moment my symptoms most closely align with ALS, even knowing that tingling and numbness are not considered to be symptoms. CIDP, Multi Focal Motor neuropathy, and Isaacs syndrome are on my radar and to a lesser extent Myasthenia Gravis.

Thus far I have had the following tests

MRI of brain and spine
Spinal Tap
Partial EMG
Tons of bloodwork

Everything has come up negative, not really happy with my EMG experience, I feel like a full all out test would be in order....

I would like to think this is Lymes disease but I had a negative titer test and I got a bill saying something about a Western Blot test, but was never told that I had received the test and certainly was given no results. That sort of makes me assume it was a negative result. Either way, my doctors are not concerned with that.

I guess, my question is if anyone has any experience with the flu shot concept. I just can't deny the correlation between that shot and the onset of my symptoms. I know all about GBS and don't think there is any way it's that. CIDP seems so clearly something my doctors should consider, but they stop short at laughing at me. My issue with it is that I understand that symptoms are symmetrical and my symptoms have been predominantly asymetrical* I guess Im just beside myself with the possibility of this being something treatable and not fighting tooth and knail for that treatment if its possible. I could never forgive myself if it turned out down the road that this could of been helped and I gave in........ so many people want me to give in

* question on symmetry. I have symptoms on both sides of my body. They are considerably more severe on the right and seem to manifest there first and migrate over. I'm also right handed so I use that side more.... my point is I think it is misleading to say that my symptoms are asymetrical or symmetrical.........I've heard the term "mirror image symmetry" I certainly do not have that, but there is some degree of symmetry.... I don't know what that means diagnosticly if anything

I guess I'm sorting of ranting, which isn't good. I would appreciate any feedback. This is all I have done for the last five months and this is my first time posting on this forum, but I've read a lot.......... You folks are all heros to me.
 

HelenL

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Hi thompsonds3, you've had alot of testing, was it with an ALS neuro? What were the results of their testing for Babinski, and clinical weakness tests that they do? Do you have footdrop in both feet?

Honestly, it sounds a bit over all your body too soon for it to be ALS, especially since you said that the EMG was normal. My first EMG was a partial, and definitely showed problems, that was the one I was diagnosed with. That test showed problems in my arms 2 years before I'm now having problems there. So even a partial one can show problems.

I also wondered if my ALS was related to a flu shot, but finally narrowed down the time period that my symptoms had started before that shot. I did get worse aftwards... I think... not sure if any relation between the two. Another thought is are you on a statin to lower your blood cholesterol? Again, I immediately got worse when I went on one a couple of months before my diagnosis.

So I guess what I'm saying is that while you definitely have something going on, the good news is that you don't have the ALS diagnosis... and may never get it. The bad news is that you need to figure out what's going on. I'm sure other forum members will answer your questions when they see it as well. Keep us posted, and good luck.
 

Zaphoon

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Wow! You sure used a lot of advanced medical terminology in your post.

Dorselflexing?

Diffuse Fasciculations?

IT band?

Where did you learn to use these terms? I'm fascinated!
 

thompsonds3

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My Neurologist was definitely not an ALS specialist. She was very nice, but I can't help but feel that I should get a second opinion. I'm in Maine, which is a really small state and I don't think we see a lot of rare diseases. However, none of my doctors are being very helpful in the search for a second opinion. I'm trying to just see the same Neuro to talk about the progression of symptoms, but I can't get an appointment before the 29th of june.

Honestly, I don't remember my Neuro doing a Babinski test. However, my PCP did. I know I'm going to sound sort of arrogant saying this, but I don't think he really knew how to do it, but it was negative. So, I'm grateful for that. The tests my doctors did showed no obvious weakness, which I have a little bit of a hard time accepting, but am very thankful for at the same time.

Thank you so much for your response and your comments. I'm not on any medications except Clonazapem to help me sleep. Also, you are so right, I have had a lot of testing and I have not gotten an ALS diagnosis, which is good. Thank you for reminding me of that. I'm just having a really hard time. Whatever is happening, I've become a completely different person in five months.
 

thompsonds3

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Wow! You sure used a lot of advanced medical terminology in your post.

Dorselflexing?

Diffuse Fasciculations?

IT band?

Where did you learn to use these terms? I'm fascinated!

I guess I've been reading up on these things. I never knew what my extensor digitorum longus was, but I sure do now. Thanks for the fascination.. unless that was sarcasm.

Sincerely though, thanks for the response.
 

Zaphoon

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No sarcasm. Thought you may be an MD or nurse or a medical tech of some kind.
 

sadiemae

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Go to ABOUTBFS. COM. It deals with questions u have
 

trfogey

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Oh, thats good. Sorry, I'm just a little on guard I guess. Thanks again.

Good thing you're on guard, because sarcasm is likely to be what you get as a response from everybody before your tenure here is over.

What have your doctors told you that they think that you have? Why don't you believe them when they tell you what they think? And which of that list of symptoms that you gave us have your doctors verified? Finally, what parts of your body are showing signs of paralysis and what type of paralysis is it?

Reading assignment for you: read the post in this forum entitled "Some Advice to Questioners, from an Answerer." Items 1-4 and 6-9 apply directly to you, especially items 6 and 7.
 
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thompsonds3

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What have your doctors told you that they think that you have? Why don't you believe them when they tell you what they think? And which of that list of symptoms that you gave us have your doctors verified? Finally, what parts of your body are showing signs of paralysis and what type of paralysis is it?


My neurologist said that my case is slightly confusing, but that at this time she had no serious concerns of a neurological problem..............Don't get me wrong, I'm thankful for that opinion and it was very helpful to me when I got it, but I haven't seen a neurologist in 10 weeks and my symptoms are getting worse.

The Doctors verified the fasciculations. Two Doctors agreed that there was something wrong with my thumb, but stopped way short at claiming it was do to a neurological disorder. Ohterwise there was no obvious clinical weakness in my exam...... again this was quite awhile ago now.

My thumb and pinky finger of my right hand no longer have complete full range of motion. Other than that I don't have any body part that remotely resembles a state of paralysis.
 

Alyoop

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If your symptoms have changed or gotten worse, then regardless of the ALS question, you should be going back to the neurologist. Many neurological disorders take a great deal of time to emerge and show the real picture. Just as frequently, over time, symptoms can recede and you can return to normal.

Go back and get your thumb checked. Can't do any harm...........but, believe what your doctor tells you.
 

sadiemae

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Read this PLEASE


Do NOT confuse "perceived" weakness with clinical weakness, nor confuse fatigued feelings with true muscle weakness. True physical muscle weakness and clinical weakness do NOT come and go. It is permanent and on-going to the point where you completely lose control and can no longer use that limb, (forever), and then it MIGRATES from there to other parts of the body. ALS is not random, and it certainly doesn't come and go like BFS does.


A tell tale sign of ALS is clinical weakness. This is REAL weakness that is permanent and continually progressive. It is caused by dying (or already dead) muscle tissue and/or dead or disconnected nerve endings between the brain and muscles. Once this happens, you lose control over that muscle PERMANENTLY, which leads to dropping things, the inability to unscrew lids off of jars, the inability to hold your coffee cup or even raise your fork to your face when eating. When it's in the legs or feet, falling down or the inability to stand or get up from a chair is common, not being able to stand on your toes or walk on your heels because the muscles are dead. When this clinical weakness is associated with ALS, it migrates onward from that point with no looking back. There are no good days or bad days, meaning, you won't lose control of your hand one day and regain control of it the next. Once muscles and nerves have died, they are dead and can't be brought back to life.
 

sadiemae

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You said and I quote

"Everything has come up negative, not really happy with my EMG experience, I feel like a full all out test would be in order.... "

READ THIS:

ALS is a nerve PATHWAY disease so if you have twitching and weakness BECAUSE of ALS in something like your little toe, and you get an EMG ANYWHERE BETWEEN that toe and your brain, it WILL show-up on the EMG because it is looking at the PATHWAYS BETWEEN that toe and your brain. ALS is also a body wide disease BEFORE it spreads to NOTICABLE symptoms. It is there long before 99% of the sufferer's even notice it, (contrary to what a lot of rookies will tell you). The twitching in ALS means it has already been there a while, has DONE damage and now the muscles are reacting by quivering. It is the whole enchilada that has to be looked at with CLINICAL weakness and a bad EMG. Without ALL of those symptoms (and then some), you have ALS about as much as someone with a common headache has a brain tumor.
 

thompsonds3

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Read this PLEASE


Do NOT confuse "perceived" weakness with clinical weakness, nor confuse fatigued feelings with true muscle weakness. True physical muscle weakness and clinical weakness do NOT come and go. It is permanent and on-going to the point where you completely lose control and can no longer use that limb, (forever), and then it MIGRATES from there to other parts of the body. ALS is not random, and it certainly doesn't come and go like BFS does.


A tell tale sign of ALS is clinical weakness. This is REAL weakness that is permanent


So, thank you for the information. I have read that text before. I know that almost all of my weak feelings at this stage could not be described clinically or in any way as REAL or PERMANENT, with the exception of some grip issues and the dorselflixion. This is weakness ive had for months and has not improved temporarily and returned it has stayed and gotten worse. It's still slight enough that it doesn't qualify as REAL and PERMANENT in a clinical examination. I'm totally aware of this I'm just afraid it could be going in that direction, there has been no reversal.

I'm a Silk Screener so I use a small hand held squeegee to print tshirts. One day I just couldn't grip it properly. I feel like there is some muscle in my hand that just isn't doing it's job and I can't grip and appropriately apply pressure to the screen. I've made an adjustment so that I'm able to still do it, but it's much more difficult. This has not improved a single bit, not temporarily and it has gotten worse.

I also have this issue when I'm pulling my belt on around the belt loops of my waste. When I grip the belt between my forefinger and my thumb I can't pull the belt through, if I try my thumb joint falls out of it's socket slightly. This has been going on for months with no improvment.

If I try to lift something like my laptop computer with my thumb on the bottom as the support I cannot lift the computer. On the left side with my left hand and thumb I have no problem doing this.

So, those are the only reasons I'm still afraid of ACTUAL not perceived weakness. I'm not convinced that this is the case, I'm still just not convinced it's impossible.

So, Sadiemae, thank you. I'm trying really hard not to confuse the two. I'm aware of the distinction and am doing my best to apply it to my situation. Thank you for the help
 

thompsonds3

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You said and I quote

"Everything has come up negative, not really happy with my EMG experience, I feel like a full all out test would be in order.... "

READ THIS:

ALS is a nerve PATHWAY disease so if you have twitching and weakness BECAUSE of ALS in something like your little toe, and you get an EMG ANYWHERE BETWEEN that toe and your brain, it WILL show-up on the EMG because it is looking at the PATHWAYS BETWEEN that toe and your brain. ALS is also a body wide disease BEFORE it spreads to NOTICABLE symptoms. It is there long before 99% of the sufferer's even notice it, (contrary to what a lot of rookies will tell you). The twitching in ALS means it has already been there a while, has DONE damage and now the muscles are reacting by quivering. It is the whole enchilada that has to be looked at with CLINICAL weakness and a bad EMG. Without ALL of those symptoms (and then some), you have ALS about as much as someone with a common headache has a brain tumor.

Good point. Thank you. I guess I'm just being stubborn in wanting a second EMG. I'm sorry.
 
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