AKmom
Senior member
- Joined
- Jun 2, 2010
- Messages
- 608
- Reason
- DX UMND/PLS
- Diagnosis
- 11/2009
- Country
- US
- State
- Alaska
- City
- Wasilla
Hi All!
I have been reading alot of this forum for quite a few days now. I have not officailly been diagnosed with PLS but the more I read the more it sounds like my problem. Please bare with me will explain my plight and then I will ask some questions.
I am now 51 years of age but have had been diagnosed with several different serious health issues since 1991. They include the following list but I have noted some with * to let you know that they have resolved or the doctors have changed their minds (this seems to happen to me frequently).
1991 cmv/ebv*
1992 CFS*
1995 Brain injury (car accident)*
1995 seizure disorder*
1996 Fibromyalgia*
1998 Gestational diabetes*
2001 type 2 diabetes*
2001 rhuematiod arthritis*
2001 poly rhuematica
2001 complex migrains (is somewhat resolved with high dose of magnesium)
2001 chronic sleep disorder with no real name (overnight testing done, I woke 375 times w/no explination. Drs. dont know diagnosed)
2001 myoclonus
2002 right sided weakness in leg
2002 periphal nuropathy
2004 mini stoke (most likely caused from estrogen for menopaus shown on mri)*
2005 right sided weakness increases and left side starts to cramp
2006 broke left hip in fall*
2006 increased clumsiness and falls
2007 mild spinal arthritis/slight bulging disc
2008 Cramping in feet begin Hammer toes begin and some other deformation on right foot
2008 hands start to spasm frequently
2008 twitching of muscles increases (anywhere on body)
2008 occasional extreme itching and swelling (almost like hives, anywhere on body)
2008 cannot walk straight line for the life of me/ left side leg weakness
2009 back cramps that require shots in the spine (last one didn't help)
2009 arm weakness/hand weakness...really lost my grip
2009 leg weakness increases/cannot do stairs or walk for more than 10 minutes without becoming very spastic (like cerebral palsy)
2009 in winter if I got cold and shiver I would totally lock up in all muscles to the point of passing out from the pain (I won't ever get in a cold car again).
2010 continuous spastic muscles (somewhat relieved by tizanidine (zanaflex)) everywhere on body
within the past month I have been having continual tight muscles in the neck jaw and around my head (like a tension headache). If I get overly tired I drool ever so slightly on the corners of my mouth (kinda embarrassing). My speech will slow somewhat with ever so slight slur of words...but its not all the time...just when I am extremely tired.
What has been ruled out thus far...
in 2008 a ms nurologist said I didn't have it. Last mri of head was in 2007. Every kind of bloodwork has been done. Only slight elevation in CRP but not enough to indicate RA or anything. No thyroid problem. No lyme desease. No serious back injury to indicate leg issues.
In Nov. 2009 had an EMG that came out ok. That neurologist was the first one to mention PLS but did not officially give me the diagnosed. He wanted me to go to Mayo Clinic. Several weeks later I got a letter from Mayo Clinic saying that I didn't qualify (or his report didn't qualify). My primary MD began to get really worried about my feet and was thinking it was charcot marie tooth disease. But the neuro didn't think so (but then he didn't think that the stoke evidence on the mri was a stroke even though two other nurologists said it was). I now have special inserts for my shoes with the right one having a brace because I have been diagnosed by pediatrist with severe dropfoot on the right. They don't help a whole lot since both my feet drag when I walk because my legs are so weak. The more I walk the heavier they get and the more pain I am in with spasms.
I now am spastic to the point that none of my muscles will relax even with massage and has progressed now to moving up into my head. My primary doc has now written Mayo Clinic again (about a month ago) and we still have yet to hear back from them. Now for my questions...
1. Since I live in Alaska, I will have to travel down to the lower 48 to some clinic to get a final diagnosed. Is there some other place in the lower 48 that is highly recommended from people here that were diagnosed? I have a hard time now with trusting what most specialists say because it seems that no two agree and that they also change their minds too much.
2. Does anyone with PLS have problems with the muscle tightness all over at the same time?
3. Do my symptoms, especially the leg/arm/hands weakness, overall spasticity, chronic fatigue, severe pain (8 to 9 on the scale with occasional bouts of a 10), slurred speech when tired and feet deformations even remotely sound like PLS?
I have been dealing with chronic pain for years but I am now getting really concerned that my mobility is so impared that I cannot continue to do anything. I am a photographer/artist and am barely able to hold my camera. I have had to quit painting/building sets for the local theater (something I used to really enjoy but stopped in 09). I cannot go out alone anymore...have to take someone with me in case I fall or cannot drive myself. Even going to the store has become almost impossible (I am starting to think I will have to use a cart if I do big shopping), I can only go for short trips. I generally keep a positive outlook on life and have come to the conclusion that whatever is effecting my body like this will not kill me but it is progressing to the point of frustration.:-(
My current meds are:
Magnesium complex
tizanidine 4mg 3x daily
ambien
as needed and used very sparingly:
Norco
tramadol (ultram)
Sorry this is so long. It has taken me 65 minutes to type it (hopefully it will send).
I have been reading alot of this forum for quite a few days now. I have not officailly been diagnosed with PLS but the more I read the more it sounds like my problem. Please bare with me will explain my plight and then I will ask some questions.
I am now 51 years of age but have had been diagnosed with several different serious health issues since 1991. They include the following list but I have noted some with * to let you know that they have resolved or the doctors have changed their minds (this seems to happen to me frequently).
1991 cmv/ebv*
1992 CFS*
1995 Brain injury (car accident)*
1995 seizure disorder*
1996 Fibromyalgia*
1998 Gestational diabetes*
2001 type 2 diabetes*
2001 rhuematiod arthritis*
2001 poly rhuematica
2001 complex migrains (is somewhat resolved with high dose of magnesium)
2001 chronic sleep disorder with no real name (overnight testing done, I woke 375 times w/no explination. Drs. dont know diagnosed)
2001 myoclonus
2002 right sided weakness in leg
2002 periphal nuropathy
2004 mini stoke (most likely caused from estrogen for menopaus shown on mri)*
2005 right sided weakness increases and left side starts to cramp
2006 broke left hip in fall*
2006 increased clumsiness and falls
2007 mild spinal arthritis/slight bulging disc
2008 Cramping in feet begin Hammer toes begin and some other deformation on right foot
2008 hands start to spasm frequently
2008 twitching of muscles increases (anywhere on body)
2008 occasional extreme itching and swelling (almost like hives, anywhere on body)
2008 cannot walk straight line for the life of me/ left side leg weakness
2009 back cramps that require shots in the spine (last one didn't help)
2009 arm weakness/hand weakness...really lost my grip
2009 leg weakness increases/cannot do stairs or walk for more than 10 minutes without becoming very spastic (like cerebral palsy)
2009 in winter if I got cold and shiver I would totally lock up in all muscles to the point of passing out from the pain (I won't ever get in a cold car again).
2010 continuous spastic muscles (somewhat relieved by tizanidine (zanaflex)) everywhere on body
within the past month I have been having continual tight muscles in the neck jaw and around my head (like a tension headache). If I get overly tired I drool ever so slightly on the corners of my mouth (kinda embarrassing). My speech will slow somewhat with ever so slight slur of words...but its not all the time...just when I am extremely tired.
What has been ruled out thus far...
in 2008 a ms nurologist said I didn't have it. Last mri of head was in 2007. Every kind of bloodwork has been done. Only slight elevation in CRP but not enough to indicate RA or anything. No thyroid problem. No lyme desease. No serious back injury to indicate leg issues.
In Nov. 2009 had an EMG that came out ok. That neurologist was the first one to mention PLS but did not officially give me the diagnosed. He wanted me to go to Mayo Clinic. Several weeks later I got a letter from Mayo Clinic saying that I didn't qualify (or his report didn't qualify). My primary MD began to get really worried about my feet and was thinking it was charcot marie tooth disease. But the neuro didn't think so (but then he didn't think that the stoke evidence on the mri was a stroke even though two other nurologists said it was). I now have special inserts for my shoes with the right one having a brace because I have been diagnosed by pediatrist with severe dropfoot on the right. They don't help a whole lot since both my feet drag when I walk because my legs are so weak. The more I walk the heavier they get and the more pain I am in with spasms.
I now am spastic to the point that none of my muscles will relax even with massage and has progressed now to moving up into my head. My primary doc has now written Mayo Clinic again (about a month ago) and we still have yet to hear back from them. Now for my questions...
1. Since I live in Alaska, I will have to travel down to the lower 48 to some clinic to get a final diagnosed. Is there some other place in the lower 48 that is highly recommended from people here that were diagnosed? I have a hard time now with trusting what most specialists say because it seems that no two agree and that they also change their minds too much.
2. Does anyone with PLS have problems with the muscle tightness all over at the same time?
3. Do my symptoms, especially the leg/arm/hands weakness, overall spasticity, chronic fatigue, severe pain (8 to 9 on the scale with occasional bouts of a 10), slurred speech when tired and feet deformations even remotely sound like PLS?
I have been dealing with chronic pain for years but I am now getting really concerned that my mobility is so impared that I cannot continue to do anything. I am a photographer/artist and am barely able to hold my camera. I have had to quit painting/building sets for the local theater (something I used to really enjoy but stopped in 09). I cannot go out alone anymore...have to take someone with me in case I fall or cannot drive myself. Even going to the store has become almost impossible (I am starting to think I will have to use a cart if I do big shopping), I can only go for short trips. I generally keep a positive outlook on life and have come to the conclusion that whatever is effecting my body like this will not kill me but it is progressing to the point of frustration.:-(
My current meds are:
Magnesium complex
tizanidine 4mg 3x daily
ambien
as needed and used very sparingly:
Norco
tramadol (ultram)
Sorry this is so long. It has taken me 65 minutes to type it (hopefully it will send).