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Santa brought a grey cloud

Happy new year! My new year's wish is that vision returns in my right eye. I awoke on Dec 29th with some optic nerve will be the 3rd time since 2019. It's the worst attack yet. I had a good run of few symptoms until November. I'm still without any diagnosis, so I'm not really allowed to complain to friends and relatives about anything that happens. They can't see what is going on, and one actually called me a hypochondriac when I told him that I can't see out of my right eye. Silly me...just worrying about nothing. I am grateful that it has not been worse. It would be nice if those in my orbit were supportive and not dismissive. I'm lucky it has only been one eye because I don't need their help or sympathy. When I had trouble walking, I remember coworkers telling me everyone has leg pain and I just need to get exercise or change my diet or whatever. They'd roll their eyes if I asked to keep the lights off over my desk so the brightness didn't hurt so much or when I wore sunglasses inside. The only thing worse for me than having symptoms is having symptoms and having to pretend I'm perfectly ok because I can't prove what is causing them. Even my GP has made a subtle sarcastic remark when I told her it was not unusual for me to have a flair up after the Flu vaccine (since I've had one every time I get vaccinated). She said it was not unusual "for YOU".

So how do you do it? Do you just "toughen up" and stop trying to relate to anyone else? Is it any easier if your condition has a label given by someone with a doctorate? Part of me wants them to be right...that I could just go get some therapy and my eye sight would return and the nerve pain flair ups would subside. I'd love to use mind over matter to stop my hearing from dropping out at inopportune times. I wish I could practice breathing exercises in order to stop my legs from burning and losing sensation when I walk. Maybe if I'd just start being honest this tightness around my ribs would go away. Maybe some exercise so I wouldn't tire so easily. I wish I would just shut up and stop being so difficult.

  1. sorry...can't edit for misspelling- flare up, not flair up.

    1. , I am so sorry you are starting 2022 with serious vision concerns!

      I do hope you are able to get into the doctor and get some answers very quickly! And I am so sorry the people around you are not supportive and understanding of what you are going through. Whether you have an official diagnosis or not, you still deserve respect and compassion. You are still experiencing symptoms that deserve to be addressed.

      I do think having a diagnosis makes it easier for the general public to grasp the seriousness of your condition. That doesn't necessarily mean they will be much more compassionate, but when you have a label for what you are experiencing, it takes some of the pressure off of you being labelled a hypochondriac. That said, I know plenty of our community members still get plenty of scrutiny and judgement from others, regardless of a diagnosis.

      And whether you have MS or another condition, keep this in mind. You would never tell a Type 1 diabetic to just 'breath through blood sugar crashes' and you wouldn't tell an amputee to just 'tough it out and not use that prosthetic'. So, why should you be any different? You are dealing with something that is out of your control. It's not your fault and while mitigation tactics (stress management, exercise) may help with some parts of the condition, they aren't going to help you regrow myelin.

      Please know you are not alone in this and you DESERVE answers and compassion, just like anyone else.

      Best, Erin, Team Member.

      1. Are you seeing a neurologist that is an MS specialist? I'm asking/suggesting this for two main reasons after reading your comments. First, optic neuritis is a common symptom of MS that usually causes many undiagnosed folks to see a specialist in the first place. If the optic nerve is inflamed, the doctor can usually see the inflammation when examining the eye closely. If inflamed, all that your are describing is valid. A doc will usually prescribe steroids to reduce the inflammation and it may take a week or two. Once the inflammation is reduced, eye disturbances are reduced. Btw, optic neuritis (inflammation of the optic nerve) is a signal of an MS flair. Second, an MS specialist will note your symptoms over time. You mentioned that you have had problems on and off since 2019. When diagnosing MS, a key element is having multiple symptoms in multiple parts of your CNS, multiple times. Diagnosing also includes testing such as MRI's, spinal taps, clinical evaluations like reflexes... If your doctor hasn't done this a second opinion may help you. Meantime, talking with other MS peers in credible places like this will give you support and knowledge that will help reduce your fears. "Pretending" to others adds more stress to an already stressful situation. Let us know when you find something out because we care. Hugs, Debbie (Team member)

        1. Like so many here, it's a long history of trying to get some kind of help.

          Around 2012 I first had an episode where I awoke and my hearing in one ear was "odd". Distorted and sounded like everyone was talking through a spinning fan blade like robots. High pitched noises were amplified and low pitch noises were muted and booming. I saw an ear/nose/throat doctor and they claimed this was congestion. It wasn't, but ok. It was clearly some kind of neurological issue and it too a week before the distortion faded away.

          Then, in 2016 I first noticed problems with my legs. I was at a conference in Las Vegas and found that my legs were in pain, going numb, and burning while walking. I thought it was just from all the exercise, and I ignored it. I kept having to sit down while walking.

          When I returned home, I saw my doctor and she suggested ibuprofen. I started experiencing numbness at night in my arms and hands and legs. I started to feel nerve pain- like ice picks or pins sticking in me. And I had weird sensations of vibration and muscle cramps. So my doctor sent me to a neurologist who was a sleep neurologist. He performed a EMG and Nerve Conduction test, which showed no issues with my peripheral nerves. He sent me for an MRI and the radiologist reported a possible cervical lesion, but the quality of the MRI was poor and he recommended a quick follow up image study to confirm it.

          So then I was referred to a neurologist who specialized in autoimmune disorders. It took over a month to get in with him, and he did not immediately order an MRI of the area in question (cervical). Instead, he did bloodwork, then 3 weeks later after our next appointment he ordered an MRI of my brain, and then a few weeks later an MRI of my thoracic region. In all, it was maybe 3 different MRIs before he decided to re-image the cervical region, and surprise- the supposed lesion was nowhere to be seen. It had been months since the first MRI that reported the lesion. He then ordered a lumbar puncture. The result was that I had oligoclonal banding in my CSF. Unfortunately, the blood serum sample showed similar oligoclonal banding, which as was explained to me- does not rule out MS, but cannot be used as a positive test under the McDonald criteria. I think then more blood tests were run looking for cancer or rare genetic diseases.

          In all, I spent over $30K out of pocket under my high deductible insurance plan for the testing over 3 years. And towards the end of 2018 the neurologist told me he could not find enough evidence for a diagnosis and that I should see a therapist in the event that the nerve issues were psychosomatic. So I considered that might be possible and I sought out a therapist and spent a lot of time studying Mindfulness meditation so I could live with whatever it was I was experiencing. I told myself that if it was some kind of degenerative autoimmune disease that I would find out soon enough with incontrovertible symptoms like vision loss or paralysis.

          Then, in 2019 I woke up one morning and saw a bunch of bright flashes in my right eye. It was like a fireworks display. When it was over I had 2 different blind spots. One was totally black and towards the edge of my vision, and the other was grey and was just under the focal point of my right eye. So I immediately went to an eye MD and they referred me to a retinal expert weeks later who said not to worry... He said it was likely caused by a bacterial infection and ordered blood tests to detect which bacteria had caused it. He said it wouldn't happen again and I'd recover fully.

          The bloodwork came back negative for any of the suspected infectious causes, and so he called it idiopathic. I explained my history of numbness and testing for MS, and he claimed that if it were MS I'd have multiple attacks of it and the damage would be worse. Fast forward to today and I've had 3 attacks and my retina has thinned to levels associated with MS.

          But I really do not want to spend another $30K on doctors and have nothing to show for it. That almost ended my marriage. My wife jokes (jabs?) that I have an MRI every year. She thinks I am a hypochondriac and wasting our money. So I've not sought out another neurologist. I've been considering seeing a Neuro Opthalmologist at this point. They should at least be familiar with MS and know if this problem warrants more testing. Even so, my wife would question it until I'm blind or unable to walk.

      2. A Neuro Opthalmologist would confirm optic neuritis if you have it, but probably not give you an MS diagnosis and then, instruct you to see a neurologist. Neurology as you know, is very complex as is MS. There are numerous stories from other MSers that state their first or second neurologist doesn't give a diagnosis one way or another. Having is essential and is the key to getting a MS dx. Can you get a referral for one? When setting up an appointment, make sure you get copies from all of your previous doctors/tests for the doc to review prior to the visit. Don't be surprised if the new doc orders new ones with a follow-up visit. Ask the office admin. about payment and costs, and maybe they can assist. I'm sorry you have been bounced around with no answers yet. Keep in touch. More hugs, Debbie (Team member)

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