Vision, balance, nausea and lesions, no diagnosis

Posted by lacetacular @lacetacular, Sep 28 1:29pm

Hello, I'm happy to have found this group. I have been searching for answers for some symptoms that have become progressively worse and I still don't have answers after seeing 4 Dr's. I have more referrals but appointments take 3+ months to get and I am at the point where I have to cut back hours at my work from this being so debilitating. I've gone from an avid runner to someone who can barely walk a mile without excruciating pain.

In Feb I started noticing vision loss/blurriness that gets worse with movement, driving, or watching things that move. Nausea, eye pain and headaches, neck and shoulder stiffness seemed to come with it. I'd had a bought of fatigue since getting covid in Nov the previous year. An optometrist found nothing to be wrong with my eyes. We ran bloodwork for a bunch of things and found a b12 deficiency, which was quickly rectified with supplements and helped the fatigue but none of the vision problems. I was feeling decent for a month and then started experiencing bouts of low blood pressure and worsening vision, balance issues and fatigue. Another b12 test showed I was high and it was not contributing to my sysmptoms. I started losing sensation in my hands and arms on both sides and losing more of my balance. Walking blurs my vision so much it results in splitting migraines for a day or two after.
An MRI found 2 lesions, but they are non specific. My appt with a neurologist was disheartening, I felt dismissed and unheard but she seemed to think my symptoms were "because I was tired". I am awaiting approval for a second opinion but it sounds like it will be several months before I can get in with another neurologist. I have a second MRI with contrast scheduled next week to see if there are more lesions or if they have grown. Also awaiting an apt with an opthamologist.
I dont know if anyone has any ideas of things I could look into or advice. Navigating the healthcare system has been hell, and I have pretty great insurance. My nausea has gotten so bad lately I can barely eat and I've dropped 15 pounds in the last week because of it. My PCP doesn't know what else to test for.
Thank you for listening.

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@lacetacular Hello, welcome to Connect. I'm happy you found us.
You must feel overwhelmed without direct answers as to why you are experiencing such vast symptoms. I'm sorry you've been made to feel dismissed by a doctor. Hopefully a second opinion from a different neurologist will be a better experience. As you continue on with testing and opinions to rule out cause, you may want to familiarize with Covid long-haul.
Here is more on the topic:

Corona Virus Long Term Effects-
https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/coronavirus-long-term-effects/art-20490351
Long haul Covid patients experience a wide range of symptoms and struggle to find specific causes or diagnoses. Do you think it may make sense for your situation? Might you bring it up to your PCP or new neurologist?

How has your employer handled cutting back work hours? Have they been supportive as you navigate this new territory?

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Sounds like the symptoms I first had with Myasthenia gravis. Have you had an Acetylcholine receptor test?

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Hello @lacetacular and welcome to Mayo Clinic Connect. I can understand your frustration in trying to figure out what has been causing your symptoms. I see @rwinney and @77smith77 have both come in to offer their experiences with you.

Navigating healthcare, especially between specialty areas, can be very taxing. Have you considered seeking care at an organization who works in cross-functional teams across specialties to find answers? I find that communicating what one doctor has found to another doctor and keeping it all straight is where many things are lost in translation. Would you agree?

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@77smith77

Sounds like the symptoms I first had with Myasthenia gravis. Have you had an Acetylcholine receptor test?

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No I'll look into this. Thank you

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@amandajro

Hello @lacetacular and welcome to Mayo Clinic Connect. I can understand your frustration in trying to figure out what has been causing your symptoms. I see @rwinney and @77smith77 have both come in to offer their experiences with you.

Navigating healthcare, especially between specialty areas, can be very taxing. Have you considered seeking care at an organization who works in cross-functional teams across specialties to find answers? I find that communicating what one doctor has found to another doctor and keeping it all straight is where many things are lost in translation. Would you agree?

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Yes I would love to find so.ething like this. I am trying to get referrals to a research hospital but I've been waiting over 6 weeks just for the referrals and heard they are booking appointments 6 months out.

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Had another MRI and I have 5 lesions now. My naseau has gotten much worse and now I am rapidly dropping weight. Still no appointments or suggestions from healthcare professionals. Considering flying abroad for service since I can't get an apt in the next 6 months. Anyone know of good neuro centers outside of the us?

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Hi. First, THERE IS HELP NOW. HERE. I realize you are feeling panic. No one can think calmly when thrown into the sudden situation you have encountered. But listen….please. You can get professional assistance promptly by contacting the American Brain Tumor Association. They can act as liaison for you to refer your diagnostics directly to specialists with expertise in your problem. They can arrange reviews in top hospitals +institutes near you if you prefer. YOU SHOULD NOT BE IN THE POSITIONOF MAKING YOUR OWN APPTS W/O having a referral. That's part of why you don't have a prompt review. Call them. 773.577.8750. They are a non profit org. NO COST. I had a Nurse Navigator with an RN and Masters degree and certification in neuro oncology. She saved my sanity and directed me to the best outcome.
Stay in toych.
Please don't get on an airplane in your condition. Don't act on panic. You can always hit the 'rrquest appt" button for Mayo Clinc right here. Please seek onlya top facility +one near you if possible. Go to their ER if necessary!!!!!!

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Examples of top neuro in US: Mayo Clinic, Duke, UCSF, Cleveland Clinic, Scripps Research, Stanford, Mass General, Columbia, MDAnderson, and there are more. US had what you need. The only off shore country I would consider is Israel which leads in many medical areas. But you need to be seen here and ideally near you AT A TOP FACILITY. ABTA can tell you even which Dr to consider+they will arrange MRI reviews +travel for you. Help is here. Hang in one day at a time. You can makit. As I said previously, identify a top hospital near you+go to ER if you feel you can't wait afew days. But try to contain eyour panic. It muddies up your symptoms +your decisions.
Will be praying for you.
🙏❤🙋

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@ncauthor

Hi. First, THERE IS HELP NOW. HERE. I realize you are feeling panic. No one can think calmly when thrown into the sudden situation you have encountered. But listen….please. You can get professional assistance promptly by contacting the American Brain Tumor Association. They can act as liaison for you to refer your diagnostics directly to specialists with expertise in your problem. They can arrange reviews in top hospitals +institutes near you if you prefer. YOU SHOULD NOT BE IN THE POSITIONOF MAKING YOUR OWN APPTS W/O having a referral. That's part of why you don't have a prompt review. Call them. 773.577.8750. They are a non profit org. NO COST. I had a Nurse Navigator with an RN and Masters degree and certification in neuro oncology. She saved my sanity and directed me to the best outcome.
Stay in toych.
Please don't get on an airplane in your condition. Don't act on panic. You can always hit the 'rrquest appt" button for Mayo Clinc right here. Please seek onlya top facility +one near you if possible. Go to their ER if necessary!!!!!!

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Welcome @ncauthor, I can see that you are very impassioned about offering help to @lacetacular who is seeking answers and medical care. Thank you.

NCauthor, I look forward to learning more about you. Were you diagnosed with a brain tumor? How are you doing now?

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I have completely lost my balance, losing eyesight, hearing, smell, and other things due to a brain bleed. It is very rare and is detectable in a Brian MRI if they know what they are looking for. The condition is called superficial siderosis. I went through several neurologists until one found it. The layer of blood in the brain oxidizes over time and disrupts signals. There is a site for it called “Living with superficial siderosis.” If you have it, you have my sympathy, there is no cure, but you can learn to live with it.

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