thompsonds3
Member
- Joined
- May 19, 2012
- Messages
- 19
- Reason
- Learn about ALS
- Country
- Uni
- State
- ME
- City
- Portland
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.
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.