Miss Diagnosed
New member
- Joined
- Dec 4, 2015
- Messages
- 4
- Reason
- Other
- Country
- US
- State
- New York
- City
- Kingston
Hi everyone, I am new here, as my screen name states I have been misdiagnosed over and over. I was diagnosed with MS in 2012, but in 2013 was told I don't have it because the white spots did not multiply on the MRI...I rejoiced like you couldn't imagine, now that I have been unofficially diagnosed with PLS, I am not rejoicing any longer and wish I could go back to when I "had" MS. (by unofficially diagnosed with PLS, I mean the doctor reading the test results say it fits and that the signal to my legs, especially my left leg, takes too long to reach my brain)
A little info on me:
I have:
~Dystonia
~Problems swallowing at times (it comes and goes)
~Problems talking, I can't yell, and when I talk too much my voice cuts out and I choke or if I get excited and talk my voice cuts off and I gag
~My right leg will become immobile when I am shopping with a cart, I must drag it to walk and lean on cart...this comes and goes
~My right leg will freeze solid and the foot will turn into the ankle and stay that way for hours, once again this happens occasionally (5-7 times a year) when it doesn't freeze solid, it will become so stiff I must drag it this happens when I walk a lot (meaning going to the grocery store)
~My left leg will suddenly have no feeling and I will fall
~I will have what I call "foot drag", that is when I can't lift my feet to walk and must use the walker and drag my feet and swing my hips to walk
~Twice in the past two years I have woken up with my entire body tingling and unable to take a full breath
~I have problems walking due to the stiffness and the weakness
~If I close my eyes and try to stand with feet together I sway and correct myself but then after about 30 seconds of thinking I am doing good I start to sway so much I fall
~I have for the past month after a nasty fall, have the feeling of someone punched me in my arms on both sides and I can't lift my arms. I woke myself up because I tried rolling and the blanket was on my arm was too heavy (it is a very light blanket)
~I have electricity running through my feet like I stepped on a live electric wire
~I have "heartbeats" in my stomach, legs and arms
~I failed nerve conduction tests
~I had I believe it was an EMG that showed it takes prolonged time for the signal to reach my legs, it is worse in my left leg.
~fatigue is an issue, I get 8 hours sleep, wake up for an hour, so tired to back to bed for 4 hours, wake up for half hour and go back to bed, this comes and goes for about 6 months now and lasts for 3 days up to a week and a half.
~I had hyper reflexes back in 2012-2014, and now I have no reflexes at all, when they were hyper and he hit my elbow, it would send me jerking uncontrollably and contract my arm into my chest.
~From 2012-2013 I had massive involuntary movements, I no longer have them, now I get them only occasionally and when I do it is when I am sleeping, I will wake up to my elbow on the bed and my arm raised and my hand going in circles about 100mph and I have no feeling whatsoever in the arm when this is happening! I only wake because it makes wind that brushes on my face.
~I wake up to no feeling from my elbows down, I move my arms but from the elbows down is completely non existent and they violently fall back and forth, I can move my elbows and shoulders but my lower arms have no feeling, this usually happens after I do mopping or sweeping the day before
~I have Babinski's sign
~I have a small cyst/tumor in my spinal chord
~In 2013 my CPK was 328, then it normalized, then it was high again but not that high I think it was 212, then checked it recently and it was in the normal range.
~I have weakness in my left hand due to an injury from 2011, I will drop plates, cups, can't cut meat, but if I squeeze the doctors hand it clamps down and won't let go!
~Twice in 2013 I tried to get out of bed, took one step and collapsed, I laid on the floor with no feeling whatsoever in my lower body
In 2014, a Doctor took one look at my contracted hand and said, "that is ALS" and sent me for a test where they put a needle in your tongue to test the muscles, I passed that test even though I have problems swallowing and talking (that come and go).
He then said "it looks like you have PLS" and he is sending me to the Mayo Clinic to confirm.
I researched PLS and one of the symptoms is not stiffness, so I am confused.
My question is, does this sound like PLS to you? Or does it sound like spinal stenosis? I went to a major hospital in NYC in 2013 for something unrelated and was told it sounds like I have a compression, yet all MRI's show no compression. I understand you can't diagnose me, but is there anything that I have written that would make you say it is related to the spine and not this disease? The more doctors I go to, the more I am misdiagnosed.
I am 45 and otherwise in perfect health.
I am sorry in advance for such a long question and so many details, but I am afraid of the Mayo Clinic and keep postponing the visit. On one hand I want to know what is wrong, but on the other hand I am scared to know! I guess I am just looking for someone to encourage me and say it sounds like its spine related and the doctor was wrong to say it looks like PLS, but I also want honesty so I can brace myself if I am confirmed with PLS. When I was misdiagnosed with MS I was devastated, I am so afraid to hear it be confirmed as PLS and not know how to handle that diagnosis!
If you were diagnosed with PLS or ALS, was it at a hospital like the Mayo Clinic? Do they just tell you that you have it and then let you go home, or do they keep you awhile until it settles in?
Thank you in advance for taking the time to read this and helping me out!
Sending love to everyone here!
A little info on me:
I have:
~Dystonia
~Problems swallowing at times (it comes and goes)
~Problems talking, I can't yell, and when I talk too much my voice cuts out and I choke or if I get excited and talk my voice cuts off and I gag
~My right leg will become immobile when I am shopping with a cart, I must drag it to walk and lean on cart...this comes and goes
~My right leg will freeze solid and the foot will turn into the ankle and stay that way for hours, once again this happens occasionally (5-7 times a year) when it doesn't freeze solid, it will become so stiff I must drag it this happens when I walk a lot (meaning going to the grocery store)
~My left leg will suddenly have no feeling and I will fall
~I will have what I call "foot drag", that is when I can't lift my feet to walk and must use the walker and drag my feet and swing my hips to walk
~Twice in the past two years I have woken up with my entire body tingling and unable to take a full breath
~I have problems walking due to the stiffness and the weakness
~If I close my eyes and try to stand with feet together I sway and correct myself but then after about 30 seconds of thinking I am doing good I start to sway so much I fall
~I have for the past month after a nasty fall, have the feeling of someone punched me in my arms on both sides and I can't lift my arms. I woke myself up because I tried rolling and the blanket was on my arm was too heavy (it is a very light blanket)
~I have electricity running through my feet like I stepped on a live electric wire
~I have "heartbeats" in my stomach, legs and arms
~I failed nerve conduction tests
~I had I believe it was an EMG that showed it takes prolonged time for the signal to reach my legs, it is worse in my left leg.
~fatigue is an issue, I get 8 hours sleep, wake up for an hour, so tired to back to bed for 4 hours, wake up for half hour and go back to bed, this comes and goes for about 6 months now and lasts for 3 days up to a week and a half.
~I had hyper reflexes back in 2012-2014, and now I have no reflexes at all, when they were hyper and he hit my elbow, it would send me jerking uncontrollably and contract my arm into my chest.
~From 2012-2013 I had massive involuntary movements, I no longer have them, now I get them only occasionally and when I do it is when I am sleeping, I will wake up to my elbow on the bed and my arm raised and my hand going in circles about 100mph and I have no feeling whatsoever in the arm when this is happening! I only wake because it makes wind that brushes on my face.
~I wake up to no feeling from my elbows down, I move my arms but from the elbows down is completely non existent and they violently fall back and forth, I can move my elbows and shoulders but my lower arms have no feeling, this usually happens after I do mopping or sweeping the day before
~I have Babinski's sign
~I have a small cyst/tumor in my spinal chord
~In 2013 my CPK was 328, then it normalized, then it was high again but not that high I think it was 212, then checked it recently and it was in the normal range.
~I have weakness in my left hand due to an injury from 2011, I will drop plates, cups, can't cut meat, but if I squeeze the doctors hand it clamps down and won't let go!
~Twice in 2013 I tried to get out of bed, took one step and collapsed, I laid on the floor with no feeling whatsoever in my lower body
In 2014, a Doctor took one look at my contracted hand and said, "that is ALS" and sent me for a test where they put a needle in your tongue to test the muscles, I passed that test even though I have problems swallowing and talking (that come and go).
He then said "it looks like you have PLS" and he is sending me to the Mayo Clinic to confirm.
I researched PLS and one of the symptoms is not stiffness, so I am confused.
My question is, does this sound like PLS to you? Or does it sound like spinal stenosis? I went to a major hospital in NYC in 2013 for something unrelated and was told it sounds like I have a compression, yet all MRI's show no compression. I understand you can't diagnose me, but is there anything that I have written that would make you say it is related to the spine and not this disease? The more doctors I go to, the more I am misdiagnosed.
I am 45 and otherwise in perfect health.
I am sorry in advance for such a long question and so many details, but I am afraid of the Mayo Clinic and keep postponing the visit. On one hand I want to know what is wrong, but on the other hand I am scared to know! I guess I am just looking for someone to encourage me and say it sounds like its spine related and the doctor was wrong to say it looks like PLS, but I also want honesty so I can brace myself if I am confirmed with PLS. When I was misdiagnosed with MS I was devastated, I am so afraid to hear it be confirmed as PLS and not know how to handle that diagnosis!
If you were diagnosed with PLS or ALS, was it at a hospital like the Mayo Clinic? Do they just tell you that you have it and then let you go home, or do they keep you awhile until it settles in?
Thank you in advance for taking the time to read this and helping me out!
Sending love to everyone here!