Color Blindness

Hi,
This is my first post, so my intoduction might be kind of long (apologies!). I'm completely overwhelmed with questions, but I'll try and keep them specific for now and go from there.
My introduction:
I'm a 45 year old man. I have not yet been diagnosed with MS (or anything else explaining my condion). I've had unexplained episodes of fatique, muscle weaknes, brain fog, tinnitus/head pressure, and other symptoms over the last 20 or more years. Most were limited to days or weeks. Over the last 8 months or so I've had all those symptoms (more severly) along with many other. Some of these include: worsening of my color blindness (I've had it mildly all my life), loss of coordination, vertigo, "brain zaps" (possibly Lhermitte's sign), 'MS hug' like chest/side/back pain or tightness, muscle and joint pain/stiffness, blured vision, light sensitivity, and others.
After many years of going along with my primary care doctor's belief that I was "in the honeymoon period of my life" physically, so I should focus on my mental health as the most likely cause of my symptoms (as opposed to pursuing physiological explanations or tests), I finally swicthed to someone else (largely on the recommendation of my long time pyschiatrist who believed I had something systemic going on). My new doc ordered blood work and an antibody test which showed a mildly positive ANA with speckled pattern; but further testing and a rheumatology exam ruled out most things in that realm. At that point he ordered a brain MRI which turned up a very obvious parietal cortical lesion (2/8/22). Since then (after an unbelievable amount of greif and self-advocacy) I've had another MRI (with contrast) and and initial neurology exam (at University of Virginia). My radiology reports were extremely limited, and apparently only focused on the one glaring area (which they thought was 'most likely from a small chronic infarct'). I have done thorough reaserch, and consulted with other physicians, and I'm highly confident that particular lesion looks a lot more like a typical demylinating lesion (involving u-fibers, distinct demarcation, ect.), and also that there are other less obvious lesions and signs pointing in the direction of a demylinating condition (most likely MS).
My neurology appointment did not go at all as I had imagined. I was dumbfounded when the neurologist told me he didn't believe my condition was "anything in the neurologic realm," and didn't even order any further tests. Presumably this was because the most acute phase of my symptoms was past by that point, so the neuro exam didn't show anything glaring; aside from a lack of right arm swing and my color blindness being severe. He dismissed the lack of arm swing as 'likley favoring it due to shoulder pain' (which I hadn't had for months); the worsening color blindness as 'a common hereditary trait' (presumably disbelieving that it had drastically changed); and any MRI evidence that could possibly point away from the radiology report out of hand (although I overheard him tell his fellow that the cortical lesion was indistinguishable from an MS lesion, and that maybe I'd 'come back in a couple years with more lesions'). He didn't want to pursure looking further into possible causes for the presumed "old stoke" either, saying it wasnt likely they'd find anything. He offered no explanation for why I might of had a stroke, and no reassurances when I expressed concern about my future risk. I had no signifigant risk factors or history to suggest I had a stroke in any case.
I later learned (online) that he leads a crusade to avoid overdiagnosis of MS at all costs, and is very vocal in his critisism of the 2017 McDonald Criteria, beliving it is too liberal.
I decided to seek a second opinion (at John Hopkins). The first thing they asked for, after I was referred and sent them my chart and images, was spine MRIs. My original neurologist reluctantly ordered them, but stated he will not appeal if my insurance won't cover them. I have them scheduled for May 1st, and assume I'll probably end up paying out of pocket.
I'm terrified of being dismissed again, or having my pysical symptoms writen off as 'most likely just pychological' when I do finally get in to see someone at John Hopkins; especially considering the notes in my chart from my previous primary care doctor and neurologist are so biased in that direction.
So finally to my first question:
Is there anything I should do to prepare? Specifically, is there a second opinion service for evaluating MRIs specifically for MS anyone might recommend? I sent my second set to Docpanel, but it was before I had done my own extensive research, so I wasn't able to ask the right questions or point out my observations. Also, the radiologist reading it wasn't someone specialized in demylinating conditions. It came back very general, brief, and inconclusive as to possible demyelination; but also with notable inconsistencies from my initial reports.
Any other advice is more than welcome of course. Thank you to anyone who took the time to read all that!
-Tom

It’s my first day out of the psych ward after spending five days there and it feels so strange. My boyfriend is treating me with kid gloves, doing everything for me without me asking. If I say I’m thirsty, a glass of water is beside me within 20 seconds, and so on. All I can think about is the hospital. I miss my friends and all of the people there. I miss the routine. I miss sitting at the table in the day room and coloring with people I became closer to in a matter of days than some I’ve known for years. Home isn’t what I pictured it to be when I wanted desperately to leave the hospital. Now I just miss the place I felt trapped in. I think I’m annoying people because I’m either talking too much about all the interesting people I met, or not talking at all because I’m thinking about those people. I have nothing else to offer in conversation right now. I feel like I just got out of jail and don’t know how to act in the real world anymore. I wonder what my friends who are still there are doing. It’s 11:40 so they’re all eating lunch right now; I wonder if angela got tacos again and if she forgot to write down “no tomatoes.” I wonder if the nurse is taking too long to get Jacob his insulin, and if anyone else is speaking up for him now that I’m gone, because he’s too nice and polite to be assertive for himself. I wonder what dope and weird picture he drew today, and who else he had to explain his color blindness to. I wonder if candace and tracee have stopped crying everyday. I miss my little island of misfit toys. No one on the outside understands the way they did. #BorderlinePersonalityDisorder #PsychWard

As a child, I was never the sick one. I was the one who exaggerated any and all injuries to my parents. A sprained ankle or wrist was never cause for concern. I would get hurt easily. I couldn’t see well but not even doctors believed me.

My joints have been hypermobile all my life and I thought it was so cool. I used to show off my “double jointed” elbows and twist my arms 360 degrees as a child to show off how well my joints moved. People either thought it was cool or were grossed out. The reactions were fun nonetheless.

As I got older, injuries happened more frequently. My knees got bad, my wrists got worse, and my ankles caused constant problems. Dislocations, subluxations, sprains, but almost never breaks. If it wasn’t broken, I didn’t need a hospital. My joints always popped back into place.

As a junior in high school, my best friend had PCOS and a cyst ruptured her ovary. She went into emergency surgery for it. A few weeks later, pelvic pain started that just kept getting worse. After telling her about the pain, she told me it was the same as what she felt each month and to go to my mother. The first hospital trip, they overlooked ovarian cysts. When the pain didn’t get better, we went back. They had found a benign cyst on my uterus the first time, but a new test had confirmed I had ovarian cysts. The first scan had seen them but they were overlooked. I started birth control to stop cysts from forming.

When I was a senior in high school, I took a sports medicine class for my physical education credit because the doctor decided I physically could not handle gym class. In this class, I discovered #EhlersDanlosSyndrome during a musculoskeletal disease project. I covered hypermobility type, type 3, for my presentation. I demonstrated every diagnosing criteria on the test. I was asked if I had it and I said I didn’t know. It turned out, my father has it, and I do too. I missed school because of doctors, but, because my teacher was the reason I found out, all of my teachers understood.

Ehlers-Danlos Syndrome is a connective tissue disease. Each type has its own properties. Hypermobility type, the one I was diagnosed with, presents with hypermobile and lax joints, elastic skin that feels velvety, and some vascular problems. No one realizes how horrible it is to live with this condition. Vascular type, the type the doctors think I may have, causes a lot of vascular problems amongst all organs in the body. Many die by the age of 27 from aortic dissection. A geneticist refused to test me because I had not gone through an aortic dissection yet, even though all of my heart problems point to it.

I was diagnosed with premature ventricular contractions, low blood pressure, #SinusTachycardia that happens everyday, and one leaking valve. One valve later became three. I was told I may never be able to have kids because my uterus could rupture. My doctor has been fighting for years for me to be tested for vascular type, type 4.

The day before my senior prom, I was diagnosed as legally blind. At 14 I discovered I needed bifocals. Senior year of marching band, I realized I couldn’t see on the sides of my vision. Diagnosis didn’t come for years after, and I was diagnosed with #RetinitisPigmentosa. RP is a rod cone dystrophy that starts with the peripheral vision deteriorating. Some just get to that point. The second step is #ColorBlindness. The last step is being completely blind. I am currently going colorblind.

At 21, I went through a #Miscarriage. Three days later, I stopped walking. I could feel below my waist, but could move nothing. It started as one leg being hard to move. After a half an hour, I couldn’t move my lower body at all. I was rushed into the hospital for testing. While I discovered I have #Scoliosis, spondylosis, and four bad disks, nothing else came back. I was diagnosed with conversion disorder.

Conversion disorder is common in people who have been abused. After or during a stressful time or event, the mind shuts down part of the body to cause it to slow down and relax. Some go temporarily blind. Some become mute. Some become deaf. I become paralyzed.

While pregnant with my miracle son, I discovered that I had gone #Undiagnosed with acid reflux all of my life. Water had always caused heartburn. When told to drink more water at a prenatal care appointment, I explained that water caused heartburn. When they found out it wasn’t the pregnancy, I was put on two acid reflux medications. Nexium is my next option, but I cannot afford it and we are fighting with my insurance for them to cover it to this day.

I was diagnosed with Grave’s disease almost a year after discovering that my thyroid is hyperactive. I weigh too little for someone who is 5’7”, and have been accused of being anorexic due to my size. I’ve been told to eat a sandwich on many occasions. Someone even told me that I just need to see a dietician, after I was told my enlarged thyroid could be cancerous. I found out it wasn’t #Cancer, but I was still treated horribly.

On top of those, I have #Depression, #Anxiety, PTSD, #Asthma, a polyp in my gall bladder, chronic myoclonic #Epilepsy, #Arthritis, carpal tunnel, TMJ, an astigmatism, a tilted uterus, tendinitis, high functioning autism, chronic migraines, and many #FoodAllergies, one of which is deadly.

I have been called a hypochondriac. I have been told I have Münchausen syndrome. I’ve been told I’m faking everything for attention. I’ve had doctors look at me and tell me they won’t do tests because I have not had rare complications associated with certain conditions. When I can barely move, I am treated like I’m faking. If I used a handicapped device such as an electric cart, I get dirty looks.

I want people to realize that just because I look healthy, that doesn’t mean I am. My son is 17 months old and doesn’t yet understand that his mommy won’t be able to do things like play soccer and chase him around the yard. I dread the day when my son realizes how sick I am, even if I don’t look it.

Please be mindful of that seemingly healthy person with a handicap placard, or that young person in the motorized shopping cart. They may be sicker than you know.