Help needed to understand
Posted: Fri Mar 10, 2017 5:06 am
Hello all,
This is my second attempt at getting this posted as I just spent a couple of hours to type this up and didnt save a draft or what I typed. I hit submit and was prompted to log in again and my post was gone.
This is harder than I thought it would be to type and I apologize for the long novel below.
I am a 40 year old (as of yesterday) Male Marine Veteran. I served from 1995-May of 2001. I deployed to the Persian Gulf on two different naval ships and received all of the vaccinations that are standard (anthrax and anti malaria are the only two I can remember). Unfortunately my copy of my medical records disappeared over the years and when I requested a new copy (specifically requesting my vaccination records) I received everything but my vaccination records. I am waiting to see if I get them with this request (once again specifically asking for those records). I grew up in an extremely toxic/abusive home. My first wife was also diagnosed as psychotic, sociopathic, bipolar, and s"healthy" meth addiction which subjected me to abuse from her. So to say that there has been traumatic events in my life. While I was in my ex had one of her "boyfriends" jump me which resulted in me hitting the back of my head on a concrete curb and being unconscious for about half a minute. I wasn't giving any imaging or anything and didn't think I was negatively affected. I did start having pretty serious migraines several times a month. I also have kerataconus, flat feet, and knee problems that have plagued me over the years. My VA PCP at the time said to just take advil migraine. Which wasn't very helpful. But I sucked it up as best as I could.
Fast forward to 2 years ago and my headaches/migraines were happening 3-5 times a week and were pretty severe. My new PCP sent me to a neurologist as well as a home sleep study. The home sleep study did not find anything and my neurologist prescribed me topomax, which I was on for about 9 months. MY neurologist ordered a CT scan and told me that I had a beautiful brain. I ended up developing kidney stones (have had no history of kidney issues or family history of them). My migraines were down to about 3 times a week but was moved off of the topomax cold turkey. My PCP never listened, constantly interrupted me and when I had the kidney stones after I gave him the ER paperwork saying the kidney stone issue which he ignored. I left the appointment and 45 minutes later he called and asked if I had kidney stones. Luckily during my next appointment he was out of the country and my current PCP was filling in for him. During my second appointment she told me that while filling in for him she heard alot of similar issues as mine from his patients.
About 2 -3 weeks later I started having double vision (2 distinct images)and was recommended to wear an eye patch and it wasn't due to my keratoconus but a 6th nerve palsy. One day when I was shopping the clerk asked me why I had the eye patch. And when I told her because of the severe double vision she said "she didn't want to scare me but she had MS and her first symptom was double vision.
A couple of weeks later I had what felt like a screwdriver lodged in my brain at my right temple which only lasted for about half an hour. My migraines usually last hours. About two hours later the left side of my face went numb and was drooping. I called the nurse line and was told to go to the ER. At the ER I was told it was bells palsy and that it is more than likely a virus and should clear up in a couple of weeks. He prescribed antivirals and sent me on my way. I let my PCP, optometrist, and neurologist know. My optometrist ordered a brain MRI since I now apparently had 2 cranial nerves involved. About 2 weeks later I also started having a burning sensation in my left arm. My optometrist made a referral to an ophthalmologist who repeated the its a virus and should go away in a couple of weeks. I asked the ophthalmologist if it could be linked to MS and he said no there were not any signs. My optometrist also ordered a brain mri which the only findings were a 3mm "abnormality" which had been seen on the CT before (which I was never notified of as well as 2 areas of dilated perivascular spaces with one of them saying dilated perivascular spaces versus less likely likely old lacunar infarct in the right parietal periatrial white matter. Dilated perivascular spaces are also incidentally noted within bilateral posterior inferior gangliocapsular regions. When I looked up what those were I saw some posts saying they're normal and some posts saying they could be signs of something else and research is continuing. I asked my neurologist about the "abnormality" as well as the significance of the dilated perivasular spaces and he said the "abnormality is a bone lesion that isn't malignant and nothing should be done with it except to do another MRI in 6 months to see if there is any change in it. He also said that the dilated perivascular spaces were normal and mean nothing. He ordered a spinal tap and prescribed gabapentin for the burning sensation and sent me on my way.
I started having alot of muscle spasms in the left side of my face as well as my legs and back. And complete loss of energy.
The images are slightly degraded by motion artifact. The ventricular system is normal in size for age. Slightly prominent bilateral frontoparietal cortical sulci, adjacent extra-axial spaces and cerebellar fissures, compatible with mild cerebral and cerebellar volume loss. The basal cisterns are patent. There are no extra-axial fluid collections, mass effect or midline shift. No areas of decreased signal/low ADC values are identified on the ADC maps to suggest restricted diffusion/acute infarct, however please note that the diffusion-weighted images were not provided for interpretation. No evidence of acute intracranial hemorrhage. No significant
parenchymal signal abnormality detected. Dilated perivascular space versus less likely old lacunar infarct in the right parietal periatrial white matter. Dilated perivascular spaces are also incidentally noted within bilateral posterior inferior gangliocapsular regions. The pituitary gland is normal in size for age. The cerebellar tonsils terminate at the level of the foramen magnum. No abnormal parenchymal, leptomeningeal or subependymal enhancement identified after administration of gadolinium. 3 mm T1 hypointense, T2 hyperintense, enhancing focus noted within the left superolateral orbital rim, corresponding to subtle lucency on prior CT scan, nonspecific, but likely benign/nonaggressive. The calvarium, skull base and visualized upper cervical spine demonstrate otherwise preserved fatty bone marrow signal. Flow voids are present within the visualized major vessels of the circle of Willis, indicating their patency. The dural sinuses appear grossly unremarkable. Hypoplastic right frontal sinus. Scattered trace mucosal thickening within
bilateral paranasal sinuses. The nasal septum is mildly deviated to the left. The mastoid air cells appear well-aerated
bilaterally. The globes appear intact. No evidence of intraocular hemorrhage or lens dislocation on either side. The optic nerves are normal in course and signal. The optic chiasm is unremarkable. The intraconal fat appears within normal limits bilaterally. The
extraocular muscles, superior ophthalmic veins, lacrimal glands and lacrimal fossae are normal bilaterally. No abnormal
intraorbital enhancement identified. Impression: 1. No acute intracranial hemorrhage, mass effect, midline shift or abnormal intracranial enhancement identified. No areas of decreased signal/low ADC values are identified on the ADC maps to suggest restricted diffusion/acute infarct, however please note that the diffusion-weighted images were not provided for interpretation. 2. No significant intraorbital abnormalities identified on either side. 3. Small 3 mm T1 hypointense, T2 hyperintense, enhancing focus within the left superolateral orbital rim, corresponding to subtle lucency on prior CT scan, nonspecific, but likely benign/nonaggressive.
After 5 times they finally got the CSF and my results were: CSF 11/29/2016: WBC=1-5/RBC=0/protein= 47 (nl= 15-45), Glc= 79 (nl= 40-70), VDRL= NEG. I also was noted to have persistent white and red blood cell counts. There were no oligognal bands found.
My PCP also ordered a comprehensive workup and the only abnormal findings were a slightly reactive FTA-ABS (syphillis test), which was retested and was then reactive, then retested again and was mildly reactive, and then retested again and was non reactive. High Kappa free light chains and high kappa/lambda light chain. The first test showed a level of 200 The normal range is 19.something. So was retested again and it was 20.43 so still high. From what I can tell this can also be an indicator of an immune disorder or plasma cell cancer. My neurologist put a consult in with a hematologist and said there is something going on but he doesn't know. He said that he would send my info down to Denver to have them take a look at it and see if they can make any sense of things. I was also scheduled for a new sleep study through the VA choice program (a program that allows vets to see non VA medical professionals). High chlestorol, an elevated HS-CRP rate (inflammation was present somewhere in my body)
A couple of weeks later (the day after my sleep study), I was going to pick up my kids from school and I started feeling out of it and the right side of my face was going numb. I called my spouse and asked her to come to the school and drive behind me to make sure we made it home safe. While we were waiting for the kids to get out of school, I had her call my PCP since was "fading fast" who told her to take me to a hospital about 2o mins away since our local hospital was vet unfriendly. She went to go drop the kids off at home an then take me to the hospital and I guess I lost consciousness and was completely unresponsive. She called 911 and I was transported to the local hospital and given Narcan (a drug to counteract opiode overdoses. I used to donate plasma for about a year straight and have a scar from the needle. I guess they thought I was a heroin addict and had an OD.I regained consciousness in the ambulance and was shaking over my whole body (stopped 2 days later). They didn't do any imaging and just ran a blood test and drug screen (which came back positive for the prescriptions I had been prescribed). My spouse brought my surface to show the ER doc my history and abnormal results and she said he just skimmed though them and remarked about the PTSD. He came back and diagnosed me with conversion disorder and altered state of consciousness due to the combination of my prescriptions. He discharged me with me having numbness in both feet as well as not being able to stand. As I was being wheeled out by my spouse a security guard came by and asked the nurse f everything was ok. and if he needed any help.
I called my PCP about what happened and she had me come in. She told me to increase the gabapentin as the burning pain was spreading to different parts of my body. She also scheduled me for a C-Spine MRI since I was having trouble moving my head. That came back with te only findings of straightening of my C-Spine probably caused by muscle spasms. I also was set up an appointment for a cpap machine. Apparently during the sleep study I stopped breathing an average of 18 times an hour with as high as 55 times. The only real abnormal finding on the C_Spine MRI was There is straightening of the cervical spine that may be secondary muscle spasm. No bone marrow edema is detected. The caliber and T2 signal of the cervical cord are maintained. The disc space heights are
preserved. There is mild disc disc is dictation at C3-4, C4-5 and C5-6. I also asked her if she could write a letter of support since I am trying to file for disability since I am not able to function, even though I wished I could work and function as normal. She said that she was unable to write any letters in support of any disability claims due to VA regs but would be glad to talk to any examiners etc that would be required and would give them my history/limitations etc. She also told me that I need to make sure to put a claim into the va for all the neurological issues I have been experiencing. My mental health team said she would see if she could and then mail it out if she was able to. So far its been a month and havent gotten anything or heard back (will ask her next week during my appt).
My hematologist also had me checked for iron deficient anemia (which was positive) and another 24 hour urine to se if there were any of the plasma cell cancers detected (there weren't). She wanted me to get an iron infusion but that would require going to Cheyenne (an hour drive from my house) 3 times in a week for them. Sinc3e my spouse just started a new job she wouldn't be able to drive me, and my PCP has restricted me to driving only locally. I would be able to get a ride from friends or the Disabled American Veterans, but since I watch my 2 year old daughter (since I can no longer work) that isn't an option. So I have been on iron for the past month and a half. Which it looks like the latest iron panel from 2 weeks ago still shows anemia. She also wanted me to get a colonoscopy/endoscopy to see if there was GI bleeding causing the anemia.
I talked to my PCP again since it had been a couple of months since my hematologist wanted me to have those procedures, and also let my PCP know that I was now also experiencing trouble swallowing. She said it could be acid reflux due to muscle spasms. She prescribed me ozematral and put me in for an esophageal dilation. She also made a referral to psychical therapy which gave me some exercises and a cane.
My neurologist had previously told me that he was going to send my records to the Denver VA neurology dept for another opinion (apparently he is the only neuro in Cheyenne). To my knowledge that was never done. As my next appointment he said it wasn't done and he was just going to refer me down to the neurology dept in Denver for a second opinion since there is obviously something going on but he doesn't know what.
On valentines Day I had those procedures done. The doc did 4 biopsies which were non-malignant, but otherwise everything was perfect. For a couple of days the stuck food feeling was gone. Since then the burning sensations have gotten worse, migraines happen about every nine days. I still have the muscle spasms (though the left side of my mouth seems to happen alot less frequently). My PCP ordered another brain MRI, as well as a spine, and CT of my abdomen (since my hematologist noticed some large lymph nodes when the CT was done for the kidney stones.
During my second PT appt, my physical therapist tried to have me do the exercises and when I was trying to do the leg lifts my right arm started shaking uncontrollably and I started feeling like was before I went unconscious. Best way I can describe it is being completely out of it along with alot of pressure in the left side of my face, dizziness, and extreme exhaustion. She went to go get my PCP or my PCP's nurse to come and check on me. My PCP was on her normal day off and her nurse took my vitals and told me that my PCP is very concerned about my case and is determined to help figure out what is going on. The next day my PCP called me to check on me and again upped the gabapentin. She also wanted to check on the status of a neuro-opthamalogist consult she placed with the VA choice program (which still hasn't been made by the choice program which is such a screwed up program but thats a whole other post/rant). I let her know that I am still waiting and she told me the latest MRI and CT results. The brain showed the same 3mm "abnormality" but didn't mention the dilated perivascular spaces.
The spine MRI report said: There is straightening of normal lumbar lordosis. Very mild grade 1 retrolisthesis of L5 on S1 is similar to prior. Conus medullaris terminates at L1. L5-S1: Broad-based disc bulge asymmetric to the left with small superimposed left paracentral inferiorly oriented extrusion. Small annular tears. Disc disease results in mild canal encroachment and closely approximates/contacts the descending left S1 nerve root within the left lateral recess. Correlate for radiculopathy within this distribution. There is mild right neural foraminal stenosis.
The abdomen CT report said: No evidence for pulmonary nodule the visualized lung bases. No hydronephrosis. Contracted gallbladder. No gallbladder wall thickening nor pericholecystic stranding. No biliary nor pancreatic ductal dilatation. Spleen is of normal size. Liver
measured 16.6 cm longitudinally. Bilateral adrenal glands appear unremarkable. Fat filled umbilical hernia. The appendix appear
unremarkable. No bowel distention, free fluid, nor free air. No hydronephrosis. Prostate measured 2.9 cm. Prostatic
calcifications. Phleboliths overlie the pelvis. Narrowed L5-S1 disc space. Posterior L5-S1 disc bulge. Minimal lumbar vertebrae
osteophytes. Mesenteric lymph nodes measuring up to 4 mm which are of normal caliber and are considered unremarkable. They
remain stable since the prior exam. No evidence for abdominal nor pelvic adenopathy.
The previous CT scan made no mention of a disc buldge or anything like that, so it appears to be new (at least since last August).
The brain MRI said: Diffusion-weighted images are obtained. There is no evidence for restricted diffusion. No evidence for acute or subacute cerebral infarction is present. Patient motion artifact is present which limits sensitivity of evaluation. The gray-white matter junction is normal. The corpus callosum, sella, and the cervicomedullary junction are within normal limits. There is no midline shift or herniation. No extra-axial collections are seen. No hemorrhage. Cervicomedullary junction is normal. Orbits are within normal limits with the exception of a tiny enhancing focus.
Impression:
1. No evidence for acute cerebral infarction, mass, hemorrhage, or extra-axial collection. 2. again seen is a tiny enhancing focus left superolateral orbital rim, finding of uncertain significance and stable compared to November 5, 2016 3. Normal enhancement of the cerebrum is seen. No other abnormal enhancement is noted.
Today I had the neuro appt in Denver. I ended up having several issues with it. I was seen by a med student and resident (which I didn't have an issue with since he said there was an attending who was going to look over his and her exam and then another attending also. During the appt, he answered his cell phone twice someone poked their head in and called him outside during the exam also. When it came to the babinski portion from what I can tell when the med student was doing it my toes spread out. She did it twice and then he did it twice again. He then took over from the med student. During the point when he asked me to move my legs I was completely unable to move them back and my right arm started trembling uncontrollably. The med student remarked the trembling and he seemed to brush it off. The whole exam took alot out of me and the burning was back with a vengeance in my arms and back and started feeling the "out of it feeling". They left the room and came back about 15 minutes later. He said that he and the other attendings had reviewed my entire history and that my symptoms were part of my PTSD. He said that my nerves were healthy (to my knowledge I have never had any nerve tests), that my nervous system and brain were normal. He then said that there was one sopt on the back of my brain that could be from a stroke from the sleep apnea or a traumatic injury. (TO my knowledge that was never brought up to me. I asked him if he meant the dilated perivascular spaces and he said no but that wouldn't explain my symptoms. He then claimed that all of my labs were normal. When I said that no I have had a few abnormal lab results such as the FTA-ABS variable results, his response was " I can say that you don't have syphilis. When I responded that I know I didn't have syphallis but there is a psychological reason for that happening (from what I have googled it could be an indication of an autoimmune disease, he just said that I just need to keep taking the drugs and work with my therapist and I would get better. I seriously don't know if he was just clowing me off because of not being able to figure out what is wrong, thinks I am just trying to get benefits, or sue the VA, or what. The fact that he said all labs were normal, brought up another spot that wasn't in the MRI reports and his overall dismissive attitude left a sour taste in my mouth.
While I know there is a mental component to this, (in my opinion its the stress of being undiagnosed with anything besides "it being in my head", dealing with the pretty much being bedridden for most of the day/night and the dismissive attitude of doctors that are supposed to help. For the first time in this whole process, I felt like I wanted to just give up on everything and another thought was stopping all my pills and trying marijuana to see if I could get back to some normal life. The only drugs besides nicotine and alcohol I have ever tried was a one time meth usage (which my ex guilted me into trying). I have no real issue with marijuana, but dont think its for me since part of my childhood was parental alcohol and drug use. As it is now I will have a beer about once a year, so thinking of something like using marijuana is a big thing for me just because of the childhood first marriage stuff.
I don't know what my next steps are since it is through the VA system, but I wrote my PCP a pretty long email detailing the appt and asking for any help she can give. I hope to hear from her tomorrow and will update if /when I do.
I again apologize for the novel and appreciate any input anyone can give. I am not sure if this is MS but from what I have researched there are alot of boxes checked off towards it being a possibility. At least from my limited interpretation. If anyone who decides to give their opinion and needs more info or lab results, I will be glad to copy paste from my med records from what I have. Thanks in advance and again I apologize for the novel.
Edit note, something that I just realized I did not include this second time were the meds I am on. Iron (anemia), Propranol (migraine prevention), gabapentin (burning nerves), potassium citrate (kidney stone preventative), oxybuyntin chlorine (urinary/kidney issues), omeprazole (possible acid reflux), temazepram (insomnia), Escitalopram Oxalate (depression), and nortriptyline (migraine preventative), sumatriptan (migraine abortive, though had an adverse reaction the first time and dont use), ambien (insomnia and was just taken off last week due to apparent sleepwalking/memory loss isues), and Lorazepam as needed (anxiety).
This is my second attempt at getting this posted as I just spent a couple of hours to type this up and didnt save a draft or what I typed. I hit submit and was prompted to log in again and my post was gone.
This is harder than I thought it would be to type and I apologize for the long novel below.
I am a 40 year old (as of yesterday) Male Marine Veteran. I served from 1995-May of 2001. I deployed to the Persian Gulf on two different naval ships and received all of the vaccinations that are standard (anthrax and anti malaria are the only two I can remember). Unfortunately my copy of my medical records disappeared over the years and when I requested a new copy (specifically requesting my vaccination records) I received everything but my vaccination records. I am waiting to see if I get them with this request (once again specifically asking for those records). I grew up in an extremely toxic/abusive home. My first wife was also diagnosed as psychotic, sociopathic, bipolar, and s"healthy" meth addiction which subjected me to abuse from her. So to say that there has been traumatic events in my life. While I was in my ex had one of her "boyfriends" jump me which resulted in me hitting the back of my head on a concrete curb and being unconscious for about half a minute. I wasn't giving any imaging or anything and didn't think I was negatively affected. I did start having pretty serious migraines several times a month. I also have kerataconus, flat feet, and knee problems that have plagued me over the years. My VA PCP at the time said to just take advil migraine. Which wasn't very helpful. But I sucked it up as best as I could.
Fast forward to 2 years ago and my headaches/migraines were happening 3-5 times a week and were pretty severe. My new PCP sent me to a neurologist as well as a home sleep study. The home sleep study did not find anything and my neurologist prescribed me topomax, which I was on for about 9 months. MY neurologist ordered a CT scan and told me that I had a beautiful brain. I ended up developing kidney stones (have had no history of kidney issues or family history of them). My migraines were down to about 3 times a week but was moved off of the topomax cold turkey. My PCP never listened, constantly interrupted me and when I had the kidney stones after I gave him the ER paperwork saying the kidney stone issue which he ignored. I left the appointment and 45 minutes later he called and asked if I had kidney stones. Luckily during my next appointment he was out of the country and my current PCP was filling in for him. During my second appointment she told me that while filling in for him she heard alot of similar issues as mine from his patients.
About 2 -3 weeks later I started having double vision (2 distinct images)and was recommended to wear an eye patch and it wasn't due to my keratoconus but a 6th nerve palsy. One day when I was shopping the clerk asked me why I had the eye patch. And when I told her because of the severe double vision she said "she didn't want to scare me but she had MS and her first symptom was double vision.
A couple of weeks later I had what felt like a screwdriver lodged in my brain at my right temple which only lasted for about half an hour. My migraines usually last hours. About two hours later the left side of my face went numb and was drooping. I called the nurse line and was told to go to the ER. At the ER I was told it was bells palsy and that it is more than likely a virus and should clear up in a couple of weeks. He prescribed antivirals and sent me on my way. I let my PCP, optometrist, and neurologist know. My optometrist ordered a brain MRI since I now apparently had 2 cranial nerves involved. About 2 weeks later I also started having a burning sensation in my left arm. My optometrist made a referral to an ophthalmologist who repeated the its a virus and should go away in a couple of weeks. I asked the ophthalmologist if it could be linked to MS and he said no there were not any signs. My optometrist also ordered a brain mri which the only findings were a 3mm "abnormality" which had been seen on the CT before (which I was never notified of as well as 2 areas of dilated perivascular spaces with one of them saying dilated perivascular spaces versus less likely likely old lacunar infarct in the right parietal periatrial white matter. Dilated perivascular spaces are also incidentally noted within bilateral posterior inferior gangliocapsular regions. When I looked up what those were I saw some posts saying they're normal and some posts saying they could be signs of something else and research is continuing. I asked my neurologist about the "abnormality" as well as the significance of the dilated perivasular spaces and he said the "abnormality is a bone lesion that isn't malignant and nothing should be done with it except to do another MRI in 6 months to see if there is any change in it. He also said that the dilated perivascular spaces were normal and mean nothing. He ordered a spinal tap and prescribed gabapentin for the burning sensation and sent me on my way.
I started having alot of muscle spasms in the left side of my face as well as my legs and back. And complete loss of energy.
The images are slightly degraded by motion artifact. The ventricular system is normal in size for age. Slightly prominent bilateral frontoparietal cortical sulci, adjacent extra-axial spaces and cerebellar fissures, compatible with mild cerebral and cerebellar volume loss. The basal cisterns are patent. There are no extra-axial fluid collections, mass effect or midline shift. No areas of decreased signal/low ADC values are identified on the ADC maps to suggest restricted diffusion/acute infarct, however please note that the diffusion-weighted images were not provided for interpretation. No evidence of acute intracranial hemorrhage. No significant
parenchymal signal abnormality detected. Dilated perivascular space versus less likely old lacunar infarct in the right parietal periatrial white matter. Dilated perivascular spaces are also incidentally noted within bilateral posterior inferior gangliocapsular regions. The pituitary gland is normal in size for age. The cerebellar tonsils terminate at the level of the foramen magnum. No abnormal parenchymal, leptomeningeal or subependymal enhancement identified after administration of gadolinium. 3 mm T1 hypointense, T2 hyperintense, enhancing focus noted within the left superolateral orbital rim, corresponding to subtle lucency on prior CT scan, nonspecific, but likely benign/nonaggressive. The calvarium, skull base and visualized upper cervical spine demonstrate otherwise preserved fatty bone marrow signal. Flow voids are present within the visualized major vessels of the circle of Willis, indicating their patency. The dural sinuses appear grossly unremarkable. Hypoplastic right frontal sinus. Scattered trace mucosal thickening within
bilateral paranasal sinuses. The nasal septum is mildly deviated to the left. The mastoid air cells appear well-aerated
bilaterally. The globes appear intact. No evidence of intraocular hemorrhage or lens dislocation on either side. The optic nerves are normal in course and signal. The optic chiasm is unremarkable. The intraconal fat appears within normal limits bilaterally. The
extraocular muscles, superior ophthalmic veins, lacrimal glands and lacrimal fossae are normal bilaterally. No abnormal
intraorbital enhancement identified. Impression: 1. No acute intracranial hemorrhage, mass effect, midline shift or abnormal intracranial enhancement identified. No areas of decreased signal/low ADC values are identified on the ADC maps to suggest restricted diffusion/acute infarct, however please note that the diffusion-weighted images were not provided for interpretation. 2. No significant intraorbital abnormalities identified on either side. 3. Small 3 mm T1 hypointense, T2 hyperintense, enhancing focus within the left superolateral orbital rim, corresponding to subtle lucency on prior CT scan, nonspecific, but likely benign/nonaggressive.
After 5 times they finally got the CSF and my results were: CSF 11/29/2016: WBC=1-5/RBC=0/protein= 47 (nl= 15-45), Glc= 79 (nl= 40-70), VDRL= NEG. I also was noted to have persistent white and red blood cell counts. There were no oligognal bands found.
My PCP also ordered a comprehensive workup and the only abnormal findings were a slightly reactive FTA-ABS (syphillis test), which was retested and was then reactive, then retested again and was mildly reactive, and then retested again and was non reactive. High Kappa free light chains and high kappa/lambda light chain. The first test showed a level of 200 The normal range is 19.something. So was retested again and it was 20.43 so still high. From what I can tell this can also be an indicator of an immune disorder or plasma cell cancer. My neurologist put a consult in with a hematologist and said there is something going on but he doesn't know. He said that he would send my info down to Denver to have them take a look at it and see if they can make any sense of things. I was also scheduled for a new sleep study through the VA choice program (a program that allows vets to see non VA medical professionals). High chlestorol, an elevated HS-CRP rate (inflammation was present somewhere in my body)
A couple of weeks later (the day after my sleep study), I was going to pick up my kids from school and I started feeling out of it and the right side of my face was going numb. I called my spouse and asked her to come to the school and drive behind me to make sure we made it home safe. While we were waiting for the kids to get out of school, I had her call my PCP since was "fading fast" who told her to take me to a hospital about 2o mins away since our local hospital was vet unfriendly. She went to go drop the kids off at home an then take me to the hospital and I guess I lost consciousness and was completely unresponsive. She called 911 and I was transported to the local hospital and given Narcan (a drug to counteract opiode overdoses. I used to donate plasma for about a year straight and have a scar from the needle. I guess they thought I was a heroin addict and had an OD.I regained consciousness in the ambulance and was shaking over my whole body (stopped 2 days later). They didn't do any imaging and just ran a blood test and drug screen (which came back positive for the prescriptions I had been prescribed). My spouse brought my surface to show the ER doc my history and abnormal results and she said he just skimmed though them and remarked about the PTSD. He came back and diagnosed me with conversion disorder and altered state of consciousness due to the combination of my prescriptions. He discharged me with me having numbness in both feet as well as not being able to stand. As I was being wheeled out by my spouse a security guard came by and asked the nurse f everything was ok. and if he needed any help.
I called my PCP about what happened and she had me come in. She told me to increase the gabapentin as the burning pain was spreading to different parts of my body. She also scheduled me for a C-Spine MRI since I was having trouble moving my head. That came back with te only findings of straightening of my C-Spine probably caused by muscle spasms. I also was set up an appointment for a cpap machine. Apparently during the sleep study I stopped breathing an average of 18 times an hour with as high as 55 times. The only real abnormal finding on the C_Spine MRI was There is straightening of the cervical spine that may be secondary muscle spasm. No bone marrow edema is detected. The caliber and T2 signal of the cervical cord are maintained. The disc space heights are
preserved. There is mild disc disc is dictation at C3-4, C4-5 and C5-6. I also asked her if she could write a letter of support since I am trying to file for disability since I am not able to function, even though I wished I could work and function as normal. She said that she was unable to write any letters in support of any disability claims due to VA regs but would be glad to talk to any examiners etc that would be required and would give them my history/limitations etc. She also told me that I need to make sure to put a claim into the va for all the neurological issues I have been experiencing. My mental health team said she would see if she could and then mail it out if she was able to. So far its been a month and havent gotten anything or heard back (will ask her next week during my appt).
My hematologist also had me checked for iron deficient anemia (which was positive) and another 24 hour urine to se if there were any of the plasma cell cancers detected (there weren't). She wanted me to get an iron infusion but that would require going to Cheyenne (an hour drive from my house) 3 times in a week for them. Sinc3e my spouse just started a new job she wouldn't be able to drive me, and my PCP has restricted me to driving only locally. I would be able to get a ride from friends or the Disabled American Veterans, but since I watch my 2 year old daughter (since I can no longer work) that isn't an option. So I have been on iron for the past month and a half. Which it looks like the latest iron panel from 2 weeks ago still shows anemia. She also wanted me to get a colonoscopy/endoscopy to see if there was GI bleeding causing the anemia.
I talked to my PCP again since it had been a couple of months since my hematologist wanted me to have those procedures, and also let my PCP know that I was now also experiencing trouble swallowing. She said it could be acid reflux due to muscle spasms. She prescribed me ozematral and put me in for an esophageal dilation. She also made a referral to psychical therapy which gave me some exercises and a cane.
My neurologist had previously told me that he was going to send my records to the Denver VA neurology dept for another opinion (apparently he is the only neuro in Cheyenne). To my knowledge that was never done. As my next appointment he said it wasn't done and he was just going to refer me down to the neurology dept in Denver for a second opinion since there is obviously something going on but he doesn't know what.
On valentines Day I had those procedures done. The doc did 4 biopsies which were non-malignant, but otherwise everything was perfect. For a couple of days the stuck food feeling was gone. Since then the burning sensations have gotten worse, migraines happen about every nine days. I still have the muscle spasms (though the left side of my mouth seems to happen alot less frequently). My PCP ordered another brain MRI, as well as a spine, and CT of my abdomen (since my hematologist noticed some large lymph nodes when the CT was done for the kidney stones.
During my second PT appt, my physical therapist tried to have me do the exercises and when I was trying to do the leg lifts my right arm started shaking uncontrollably and I started feeling like was before I went unconscious. Best way I can describe it is being completely out of it along with alot of pressure in the left side of my face, dizziness, and extreme exhaustion. She went to go get my PCP or my PCP's nurse to come and check on me. My PCP was on her normal day off and her nurse took my vitals and told me that my PCP is very concerned about my case and is determined to help figure out what is going on. The next day my PCP called me to check on me and again upped the gabapentin. She also wanted to check on the status of a neuro-opthamalogist consult she placed with the VA choice program (which still hasn't been made by the choice program which is such a screwed up program but thats a whole other post/rant). I let her know that I am still waiting and she told me the latest MRI and CT results. The brain showed the same 3mm "abnormality" but didn't mention the dilated perivascular spaces.
The spine MRI report said: There is straightening of normal lumbar lordosis. Very mild grade 1 retrolisthesis of L5 on S1 is similar to prior. Conus medullaris terminates at L1. L5-S1: Broad-based disc bulge asymmetric to the left with small superimposed left paracentral inferiorly oriented extrusion. Small annular tears. Disc disease results in mild canal encroachment and closely approximates/contacts the descending left S1 nerve root within the left lateral recess. Correlate for radiculopathy within this distribution. There is mild right neural foraminal stenosis.
The abdomen CT report said: No evidence for pulmonary nodule the visualized lung bases. No hydronephrosis. Contracted gallbladder. No gallbladder wall thickening nor pericholecystic stranding. No biliary nor pancreatic ductal dilatation. Spleen is of normal size. Liver
measured 16.6 cm longitudinally. Bilateral adrenal glands appear unremarkable. Fat filled umbilical hernia. The appendix appear
unremarkable. No bowel distention, free fluid, nor free air. No hydronephrosis. Prostate measured 2.9 cm. Prostatic
calcifications. Phleboliths overlie the pelvis. Narrowed L5-S1 disc space. Posterior L5-S1 disc bulge. Minimal lumbar vertebrae
osteophytes. Mesenteric lymph nodes measuring up to 4 mm which are of normal caliber and are considered unremarkable. They
remain stable since the prior exam. No evidence for abdominal nor pelvic adenopathy.
The previous CT scan made no mention of a disc buldge or anything like that, so it appears to be new (at least since last August).
The brain MRI said: Diffusion-weighted images are obtained. There is no evidence for restricted diffusion. No evidence for acute or subacute cerebral infarction is present. Patient motion artifact is present which limits sensitivity of evaluation. The gray-white matter junction is normal. The corpus callosum, sella, and the cervicomedullary junction are within normal limits. There is no midline shift or herniation. No extra-axial collections are seen. No hemorrhage. Cervicomedullary junction is normal. Orbits are within normal limits with the exception of a tiny enhancing focus.
Impression:
1. No evidence for acute cerebral infarction, mass, hemorrhage, or extra-axial collection. 2. again seen is a tiny enhancing focus left superolateral orbital rim, finding of uncertain significance and stable compared to November 5, 2016 3. Normal enhancement of the cerebrum is seen. No other abnormal enhancement is noted.
Today I had the neuro appt in Denver. I ended up having several issues with it. I was seen by a med student and resident (which I didn't have an issue with since he said there was an attending who was going to look over his and her exam and then another attending also. During the appt, he answered his cell phone twice someone poked their head in and called him outside during the exam also. When it came to the babinski portion from what I can tell when the med student was doing it my toes spread out. She did it twice and then he did it twice again. He then took over from the med student. During the point when he asked me to move my legs I was completely unable to move them back and my right arm started trembling uncontrollably. The med student remarked the trembling and he seemed to brush it off. The whole exam took alot out of me and the burning was back with a vengeance in my arms and back and started feeling the "out of it feeling". They left the room and came back about 15 minutes later. He said that he and the other attendings had reviewed my entire history and that my symptoms were part of my PTSD. He said that my nerves were healthy (to my knowledge I have never had any nerve tests), that my nervous system and brain were normal. He then said that there was one sopt on the back of my brain that could be from a stroke from the sleep apnea or a traumatic injury. (TO my knowledge that was never brought up to me. I asked him if he meant the dilated perivascular spaces and he said no but that wouldn't explain my symptoms. He then claimed that all of my labs were normal. When I said that no I have had a few abnormal lab results such as the FTA-ABS variable results, his response was " I can say that you don't have syphilis. When I responded that I know I didn't have syphallis but there is a psychological reason for that happening (from what I have googled it could be an indication of an autoimmune disease, he just said that I just need to keep taking the drugs and work with my therapist and I would get better. I seriously don't know if he was just clowing me off because of not being able to figure out what is wrong, thinks I am just trying to get benefits, or sue the VA, or what. The fact that he said all labs were normal, brought up another spot that wasn't in the MRI reports and his overall dismissive attitude left a sour taste in my mouth.
While I know there is a mental component to this, (in my opinion its the stress of being undiagnosed with anything besides "it being in my head", dealing with the pretty much being bedridden for most of the day/night and the dismissive attitude of doctors that are supposed to help. For the first time in this whole process, I felt like I wanted to just give up on everything and another thought was stopping all my pills and trying marijuana to see if I could get back to some normal life. The only drugs besides nicotine and alcohol I have ever tried was a one time meth usage (which my ex guilted me into trying). I have no real issue with marijuana, but dont think its for me since part of my childhood was parental alcohol and drug use. As it is now I will have a beer about once a year, so thinking of something like using marijuana is a big thing for me just because of the childhood first marriage stuff.
I don't know what my next steps are since it is through the VA system, but I wrote my PCP a pretty long email detailing the appt and asking for any help she can give. I hope to hear from her tomorrow and will update if /when I do.
I again apologize for the novel and appreciate any input anyone can give. I am not sure if this is MS but from what I have researched there are alot of boxes checked off towards it being a possibility. At least from my limited interpretation. If anyone who decides to give their opinion and needs more info or lab results, I will be glad to copy paste from my med records from what I have. Thanks in advance and again I apologize for the novel.
Edit note, something that I just realized I did not include this second time were the meds I am on. Iron (anemia), Propranol (migraine prevention), gabapentin (burning nerves), potassium citrate (kidney stone preventative), oxybuyntin chlorine (urinary/kidney issues), omeprazole (possible acid reflux), temazepram (insomnia), Escitalopram Oxalate (depression), and nortriptyline (migraine preventative), sumatriptan (migraine abortive, though had an adverse reaction the first time and dont use), ambien (insomnia and was just taken off last week due to apparent sleepwalking/memory loss isues), and Lorazepam as needed (anxiety).
