ccooper
New member
- Joined
- May 16, 2021
- Messages
- 1
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- IN
- City
- Aurora
I have an appointment with a Neuromuscular Physician tomorrow. The last 8 months has been a journey for me and my family. I have never seen so many doctors, needles and bills in my entire life. I am writing this now, wondering what that appointment will lead me next. I have shared limited information with my loved ones on what has been happening to my body and mind. No news is good news, right! I am hoping that putting this on paper, hitting the send button and praying will transcend positive energy over me and my family.
Over the last few years I have experienced episodes of muscle tightness, in the my left shoulder. I have seen a provider on a couple occasions for treatment, which seems to be mix steroids and muscle relaxers. I have noticed some changes in my strength in my left arm over the past couple years and reached out to a Orthopedic Office, who ordered an MRI of my c-spine. Unfortunately, the pandemic hit and my imaging appointment was not the priority. Over the tail end of summer, in August, I experienced significant muscle tightness in my right hip. It felt like my upper leg was frozen and my activities over the week and on, suffered.
I ended up contacting my PCP to discuss and was sent over to a Neurologist for a follow up. That visit, was the first in a few years. He did a routine screen, blood work, urine, etc and discussed the symptoms I had been experiencing. Working through the timelines and answering the questions, left me feeling a bit defeated. I new there were changes long before August, but could not really speak to them.
When I saw the Neurologist in October, the stiffness had resided in my hip, but left me with weak right leg. Over the months, I developed swing in my right leg. My ability to jump up from a sitting position continued to change as well as the swiftness of my walk. I just don't feel as steady on my feet. I find myself hitting corners of the wall if I go to fast around a corner or putting my hand up to the wall or on tables for reassurance. After a 30 minute appointment, I ended up leaving the visit with an order for an MRI of my Brain and C-spine, as well as an EMG.
I completed my imaging and was told the MRI of my Brain was normal. My c-spine showed, what was considered by the radiologist as, an "unusual" T2 hyper intensity lesion from C2-C4 in the posterior column and small dot like focus, sryinx, a hyper T2 lesion at C6-C7, which could possibly be MS, a demyelinating disease or B12 deficiency. The lesion was non reactive to contrast. A very large order of blood work was placed and a lumbar puncture. I also received additional imaging of my thoracic-spine. Everything came back normal and I was referred to the The MS clinic at the University Hospital in my area for a second opinion. In between those visits I completed the EMG which for my left arm and left leg. My left arm revealed, moderate left median nerve damage, and I was told to wear a wrist splint. The left leg was normal.
My UC appointment was scheduled in January. From October to January, things did not improve or dramatically change. I have noticed what I would describe as butterflies on my skin and/or muscle spasms, in different areas of my body. I notice it the most at rest. There has been increased cramping in my left hand and arm. I feel my left hand just wanting to curl up like I am holding a ball. I talked with the UC MS Provider about my timeline of symptoms, an exam was completed and my images were reviewed. I left the office with an order for Physical Therapy, Muscle Relaxers, a diagnosis of muscle spasms and additional imaging order for 6 months. The MS specialist felt, the cervical lesion was not an inflammatory or demyelinating disease or MS. In her opinion the lesion was something I was born with, a fluid filled cyst. She did say that a follow up with Neurosurgeon could be a recommendation if I was still experiencing the issues after PT and the medication regimen. I was thrilled to hear the news, not MS!
After leaving that appointment I made an appointment with a NeuroSurgeon a week later. His specialty is Syringomygelia, the drainage and correction of fluid filled cysts or syrinx. I wanted to ensure the stability of this area and get his recommendations. During the visit he completed an exam findings similar to UC. After discussing the events with me, reviewing the images, he felt the lesion from C2-C4 was not congenital and was a demyelinating disease. He stated he disagreed with the UC Specialist and asked that I get another opinion from a better skilled Neurologist. He ordered a lumbar-MRI, which showed some degenerative changes, facet arthropathy and edema. He deemed it as normal then referred me to an MS specialist for another opinion. My heart just sank, as I walked out with another referral to another provider.
I as followed up with a Rhuemotologist after my PCP recommended additional testing. She ran another list of blood work for a list of muscular diseases, which all were normal.
The therapy was a good experience and my head drop exercises have helped. The massages during my visits have helped with some of the tension in my upper back and neck. Overall, it was good to just feel like I am doing something to help myself feel better. I ended up having repeat imaging of my c-spine after my physical therapy appointments hoping to hear that it had improved or was unchanged. The comparative images in April were considered similar to the prior for the most part, nothing to significant. I was provided a follow up on the results from the MS specialist. She still felt it was most likely a syrinx, one that was separated. She did ask that I keep my Neuromuscular appointment and then following that we would come up with next steps.
I know this forum is for feedback on my symptoms as they relate to ALS and/or PLS. I appreciate the space to type this out and know that someone is going to be on the other side offering support. To be honest, I don't know what is going on and seems the providers who have managed my care are in the same boat. All I know is that being positive and maintaining what I can control is going to be important no matter what tomorrow brings. I have learned alot about myself, diseases processes and patience. I really wish everyone the best on this site. Thanks
Over the last few years I have experienced episodes of muscle tightness, in the my left shoulder. I have seen a provider on a couple occasions for treatment, which seems to be mix steroids and muscle relaxers. I have noticed some changes in my strength in my left arm over the past couple years and reached out to a Orthopedic Office, who ordered an MRI of my c-spine. Unfortunately, the pandemic hit and my imaging appointment was not the priority. Over the tail end of summer, in August, I experienced significant muscle tightness in my right hip. It felt like my upper leg was frozen and my activities over the week and on, suffered.
I ended up contacting my PCP to discuss and was sent over to a Neurologist for a follow up. That visit, was the first in a few years. He did a routine screen, blood work, urine, etc and discussed the symptoms I had been experiencing. Working through the timelines and answering the questions, left me feeling a bit defeated. I new there were changes long before August, but could not really speak to them.
When I saw the Neurologist in October, the stiffness had resided in my hip, but left me with weak right leg. Over the months, I developed swing in my right leg. My ability to jump up from a sitting position continued to change as well as the swiftness of my walk. I just don't feel as steady on my feet. I find myself hitting corners of the wall if I go to fast around a corner or putting my hand up to the wall or on tables for reassurance. After a 30 minute appointment, I ended up leaving the visit with an order for an MRI of my Brain and C-spine, as well as an EMG.
I completed my imaging and was told the MRI of my Brain was normal. My c-spine showed, what was considered by the radiologist as, an "unusual" T2 hyper intensity lesion from C2-C4 in the posterior column and small dot like focus, sryinx, a hyper T2 lesion at C6-C7, which could possibly be MS, a demyelinating disease or B12 deficiency. The lesion was non reactive to contrast. A very large order of blood work was placed and a lumbar puncture. I also received additional imaging of my thoracic-spine. Everything came back normal and I was referred to the The MS clinic at the University Hospital in my area for a second opinion. In between those visits I completed the EMG which for my left arm and left leg. My left arm revealed, moderate left median nerve damage, and I was told to wear a wrist splint. The left leg was normal.
My UC appointment was scheduled in January. From October to January, things did not improve or dramatically change. I have noticed what I would describe as butterflies on my skin and/or muscle spasms, in different areas of my body. I notice it the most at rest. There has been increased cramping in my left hand and arm. I feel my left hand just wanting to curl up like I am holding a ball. I talked with the UC MS Provider about my timeline of symptoms, an exam was completed and my images were reviewed. I left the office with an order for Physical Therapy, Muscle Relaxers, a diagnosis of muscle spasms and additional imaging order for 6 months. The MS specialist felt, the cervical lesion was not an inflammatory or demyelinating disease or MS. In her opinion the lesion was something I was born with, a fluid filled cyst. She did say that a follow up with Neurosurgeon could be a recommendation if I was still experiencing the issues after PT and the medication regimen. I was thrilled to hear the news, not MS!
After leaving that appointment I made an appointment with a NeuroSurgeon a week later. His specialty is Syringomygelia, the drainage and correction of fluid filled cysts or syrinx. I wanted to ensure the stability of this area and get his recommendations. During the visit he completed an exam findings similar to UC. After discussing the events with me, reviewing the images, he felt the lesion from C2-C4 was not congenital and was a demyelinating disease. He stated he disagreed with the UC Specialist and asked that I get another opinion from a better skilled Neurologist. He ordered a lumbar-MRI, which showed some degenerative changes, facet arthropathy and edema. He deemed it as normal then referred me to an MS specialist for another opinion. My heart just sank, as I walked out with another referral to another provider.
I as followed up with a Rhuemotologist after my PCP recommended additional testing. She ran another list of blood work for a list of muscular diseases, which all were normal.
The therapy was a good experience and my head drop exercises have helped. The massages during my visits have helped with some of the tension in my upper back and neck. Overall, it was good to just feel like I am doing something to help myself feel better. I ended up having repeat imaging of my c-spine after my physical therapy appointments hoping to hear that it had improved or was unchanged. The comparative images in April were considered similar to the prior for the most part, nothing to significant. I was provided a follow up on the results from the MS specialist. She still felt it was most likely a syrinx, one that was separated. She did ask that I keep my Neuromuscular appointment and then following that we would come up with next steps.
I know this forum is for feedback on my symptoms as they relate to ALS and/or PLS. I appreciate the space to type this out and know that someone is going to be on the other side offering support. To be honest, I don't know what is going on and seems the providers who have managed my care are in the same boat. All I know is that being positive and maintaining what I can control is going to be important no matter what tomorrow brings. I have learned alot about myself, diseases processes and patience. I really wish everyone the best on this site. Thanks
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