Good evening to everyone. I have been watching posts for a few months now, curious to see if I fit in here.
My story begins in 2003 when I was unable to move off my couch for a week a time at some points (Colorado.) Long story short, received botox injections (17 every nine weeks) to try and coat nerve endings to reduce muscle spasms. Neuro dx fibromyalgia at that point. So I have been dealing with different and the same issues for years.
In 2006 we left the cold weather of CO and moved to the east coast of NC (live minutes from the ocean.) This past summer hit me fairly hard. I remember calling my doctor from work on a Friday afternoon begging for something to stop the pain in my legs. I could barely walk... I forgot to mention that I am a construction inspector on the surrounding military bases, so walking is an everyday thing for me. I have always been in construction, building or inspecting. So I am use to being on my feet all day in all types of weather.
I can't even get through the dang grocery store without my legs getting weak... just infuriates me!!
Long time symptoms include;
Blurred vision
arm/leg weakness - pain
numbness/tingling/burning sensation
migraines
excessive sweating - this past summer it began
bowel/bladder issues
gastritis
bad sleeping - insomnia or not enough sleep
fatigue
I am sure I am not listing things, I can't remember like I use to. I do have a vitamin D and B12 deficiency which I am working on. Lymph's were a little elevated, but are leveling off.
Not sure why I am on here other than curious. My biggest issues is weakness/spasms/pain in my legs. Most days I am good for a little while, then they give out on me.
I am currently seeing a MS specialist at a university hospital. His initial thoughts are Primary. My brain scans are fairly clean, minor hyper intensities. I go back on 2/18 for vision - leg and arm evokes along with thoracic mri and sleep study.
From what I have researched the PPMS effects are typically seen with leg issues at presentation. My neuro thinks I have been mislead all these years with the fibro dx. He was very unhappy with the botox injections that were administered.
During the office exam, I failed my balance test and had little feeling in both legs and arms. So somewhere my signals are off.
Guess I am just a basket case in waiting for someone to tell me that this is not all a figment of my imagination. Sometimes I feel like I am just losing my mind and my body is giving me the finger...
My family is great, but they just don't understand what hell this waiting game is. I think I would just rather have an accurate dx and fight from there. At least then I would no it's not just in my head.
God bless all of you for dealing with all that you do!!!
My story begins in 2003 when I was unable to move off my couch for a week a time at some points (Colorado.) Long story short, received botox injections (17 every nine weeks) to try and coat nerve endings to reduce muscle spasms. Neuro dx fibromyalgia at that point. So I have been dealing with different and the same issues for years.
In 2006 we left the cold weather of CO and moved to the east coast of NC (live minutes from the ocean.) This past summer hit me fairly hard. I remember calling my doctor from work on a Friday afternoon begging for something to stop the pain in my legs. I could barely walk... I forgot to mention that I am a construction inspector on the surrounding military bases, so walking is an everyday thing for me. I have always been in construction, building or inspecting. So I am use to being on my feet all day in all types of weather.
I can't even get through the dang grocery store without my legs getting weak... just infuriates me!!
Long time symptoms include;
Blurred vision
arm/leg weakness - pain
numbness/tingling/burning sensation
migraines
excessive sweating - this past summer it began
bowel/bladder issues
gastritis
bad sleeping - insomnia or not enough sleep
fatigue
I am sure I am not listing things, I can't remember like I use to. I do have a vitamin D and B12 deficiency which I am working on. Lymph's were a little elevated, but are leveling off.
Not sure why I am on here other than curious. My biggest issues is weakness/spasms/pain in my legs. Most days I am good for a little while, then they give out on me.
I am currently seeing a MS specialist at a university hospital. His initial thoughts are Primary. My brain scans are fairly clean, minor hyper intensities. I go back on 2/18 for vision - leg and arm evokes along with thoracic mri and sleep study.
From what I have researched the PPMS effects are typically seen with leg issues at presentation. My neuro thinks I have been mislead all these years with the fibro dx. He was very unhappy with the botox injections that were administered.
During the office exam, I failed my balance test and had little feeling in both legs and arms. So somewhere my signals are off.
Guess I am just a basket case in waiting for someone to tell me that this is not all a figment of my imagination. Sometimes I feel like I am just losing my mind and my body is giving me the finger...
My family is great, but they just don't understand what hell this waiting game is. I think I would just rather have an accurate dx and fight from there. At least then I would no it's not just in my head.
God bless all of you for dealing with all that you do!!!
I appreciate the information from you both.
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