Hi everyone! Been a long time since I’ve posted. Interesting day today. Saw neuro ophthalmologist today. I have all types of nystagmus. Says it’s probably peripheral vestibular malfunction and maybe something wrong with my ear canals/bones. Wants brain MRI and possible CT angio since I have a small brain artery aneurysm.
As bad as all the above sounds, he is going to push for me to start another therapy. IVIG, Rituxan, MTX or plasmapheresis. I was so elated that someone actually took my neuro symptoms seriously and recorded actual neuro problems in my chart. Cranial nerve neuritis finally seen and documented. Been fighting for this for over a year now!
To those still struggling to find your champion super doctor, keep on keeping on. You’ll find one in time. They are rare. ❤️
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Jmiller623
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Thanks Roarah. I don’t know why but for aneurysms they prefer CTA per radiologist read on MRI. I had MRI/MRA last time too. He said he was going to hold off on CTA for now until MRI comes back. He’s worried about hitting my kidneys with contrast.
I have a distal ica fmd, not anuerysm , but mine is followed now with mra but I have had dozens of head ct's in the last year so I think they are trying to mitigate radiation. Good luck!
🤩👏👏👏👏 good news! Hope you’ll keep us posted: EVERY detail is helping me (although I’m in the UK with the NHS, & I think you’re in the USA where protocols are diff)
Am especially grateful cause all my early onset multisystem neuropathies are rapidly getting even worse: seem to have speeding up after neurosurgery las summer (it’s the anaesthetic mainly, we think: have responded same way to all surgeries over my 66 years). My vestibular neuritis (became a big prob in 1980s & progressed unmedicated until 2010) is sorta more manageable/reasonably adequately medicated now (daily 10mg pred + 1000mg myco) but the weekly primary immunodeficiency disease (PID) Immunoglobulin Replacement Therapy (IGRT) dose immunology has me on now is lower than therapeutic doses for neurological conditions, so...(immunology urged me to switch from monthly hospital infusion ward IVIG to weekly DIY home SCIG due to COVID).
Fantastic achievement: congrats❣️ wishing you every ounce of luck there is going ❤️🍀❤️🍀 Coco
Thanks Coco! I’ve had strabismus since I was very very young. My vision has always been wonky so didn’t think much of my blurred vision. My nerves problems esp sympathetic drive from dysautonomia is raging right now. Along with rashes, pleuritis and all the joys of lupus. I’m hoping to get IVIG dose prescribed for autoimmune neuro problems. Fingers crossed. I messaged my rheum about the appt telling her that he wants escalated therapy. I’ve failed CellCept and Imuran. Very bad reactions.
It’s a lot to cope with, ugh...Makes sense in terms of my experience: we think my versions set in during childhood...but way back then things were handled differently in Philadelphia where I mostly grew up. The dysautonomia especially, ugh. Count myself very very lucky myco has suited me from the start...I really should be trying an increase now, but putting that off as long as poss. Hoping you’ll post about your rheumy’s reaction 👍🤞
Rheumie’s reaction was not to my liking. She told me to go ask what other rheumatologists that I have seen think about getting IVIG. I said one agreed and the other will only talk to my healthcare providers so she’ll have to call the other rheumatologist. She gave me another medrol pak... this is the 3rd this year which she was told was a big no no by one of my second opinions who is highly regarded. So I sent this nice note to my rheumie today after sleeping on it. Putting my foot down on this one. Tired of accepting no for an answer when I feel like crap and am just slowly getting worse.
Hi Dr. Anonymous 1,
During my appt with Dr. Anonymous 2, she said if neurology saw any evidence of neuropathy then she would agree with IVIG if that is what neurology recommended. Dr. Anonymous 3 will only speak to you about my medical care in order to avoid any confusion in mgmt.
I'm sure the MRI results will also have bearing on the plan moving forward if anything shows up. Is there a reason why you would be hesitant to even try something like IVIG? I think it's worth trying and would carry little risk in my situation. I also am getting the feeling that you feel my case isn't severe enough to warrant such treatment. I have all types of nystagmus on exam. I'd like to preserve my vision first and foremost.
I'm not sure you understand the gravity of how much the nerve issues affect the quality of my life. Between the swallowing and esophagus issues, inability to stand for any extended period of time without lightheadedness, the headaches/migraines, the constant out of the blue nausea, slow GI motility, the sweating and inability to come off a beta blocker due to evident (what I think is) dysautonomia/high sympathetic tone (my HR goes into 140-150s without atenolol), the blurred vision, the inability to focus my eyes enough to read a book for any length of time, the imbalance with inability to even walk heel-toe properly. This all has gotten worse with odd sensory problems of the hands, feet and forehead.
I am taking so many other medications for these symptoms and they also have their own side effects, mostly sedation for a lot of them. I do believe that my symptoms should be addressed beyond what we are doing currently. I did not ask for any certain therapy or mention escalation of therapy at all during my neuro appt. My husband can attest to this. Dr. Anonymous 4 was quite adamant that escalation of therapy should be considered given my symptoms and physical exam findings.
I hope you will understand that this is not me guiding my own management. The plan came from neuro and I do agree.
I'm so sorry you are suffering all of these health problems, but so glad that you have found someone, finally, who heeds those problems and is setting about doing something to help. Fingers crossed you will start to feel better symptomatically very soon 👍 Hoping I will find the equivalent soon as my neuro problems are not going away!
Thanks Kay. I think the problem is there is no lab to check for neuro problems. They have to become glaringly obvious for anyone to care or take notice. With pancreas, liver, kidneys, heart there are labs to prove abnormalities exist. Although I’ve complained about unilateral weakness and sensory deficits, blurred vision beyond sicca, bad parasthesias, dysautonomia symptoms, since my labs are normal, I look normal and am walking, no one really takes notice.
I think NPSLE probably delays diagnosis for a lot of people esp since they have a high prevalence of ds-DNA negative patients. Even worse, those with NPSLE are also at increased risk of organ dysfunction in the future. It really pushes my buttons that this wasn’t picked up earlier when I already was seeing an ophthalmologist. Shame on him.
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