This is my first post to this forum so I apologize if this is the wrong place for this! I have been dealing with an increase in typical symptoms related to autoimmune flare-ups (fatigue, joint pain/swelling, brain fog, etc.). However, over the past month some things got rapidly worse - muscle loss, blurred vision at a distance and up close, eyes won't stay focused on any object for any period of time, severe photophobia (sometimes even have to wear sunglasses indoors), heightened startle reflex, and rapid cycling mood/emotion changes.
The mood/emotional changes are the most concerning; starting about a week ago I noticed I would be motivated to do a project then suddenly the motivation just disappeared and would immediately be followed with bouts of emotional numbness and onset of "brain fog". Finally, a few days ago it became almost impossible to control my emotions - I would start crying for no reason and then suddenly stop. I will suddenly become highly aroused (sexually) and then my mind will suddenly go blank and I will literally feel emotionally numb. When I am highly stimulated (like in a moving vehicle where lots of things are constantly moving/changing) I have started to lose track of time, and often become confused and highly agitated.
My rheumatologist says that while some of these things have associations with autoimmune flares, they are likely neurological. The ophthalmologist says my eyeballs themselves have no abnormalities and the problems are likely in the brain. My psychiatrist also says that the sudden onset and severity of these symptoms are most likely neurological since my mood had been very stable for years. But here is the struggle... The neurologist admits that these speed and severity of these latest symptoms are likely neurological, but she says that it doesn't fit well with MS (I have some lesions in the brain but none on the spine as of a year ago), Parkinson's, early onset Alzheimer's, or Multiple System Atrophy (not enough areas have atrophied) - even though she says neurodegeneration is occurinng. Apparently the high number of conditions I have make it almost impossible for her to narrow down the cause.
Has anyone ever had these (or similar) kind of emotional and physical symptoms rapidly appear? Thank you in advance for any ideas or guidance!!!!!
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TiredNerd
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Hi I’m 22 I go through these things and I get told it’s panic and anxiety and stress. Even though I’ve told multiple doctors it doesn’t feel like anxiety and panic. I’ve had a brain mri done and everything was fine. I know I’m not much help but like could it be stress?
I appreciate the reply! I have a significant amount of physiological stress because of the constant pain and complications from autoimmune flareups. I actually did ask the psychiatrist that question because even though I don't think I am abnormally stressed, that doesn't mean it isn't there. He says it is highly unlikely.
In my case however, previous MRIs have shown significant atrophy in a few areas of the brain (including hippocampus, thalamus, areas of the temporal lobe, as well as several lesions in the periventricular area. But I guess the patterns don't fit well with any particular condition (at least that is the impression I got from the doctor).
Also, have you heard of something called Pseudobulbar affect (PBA)? My psych doctor had said some of the symptoms match but given the other things going on in my case it wasn't high on his list.
Hello Tired. I'm not in a position to offer suggestions re your many symptoms and issues, but I did wonder if it might be helpful for you to also post your enquiry on the 'Headway' forum as well as here on Neuro Support if you haven't already? Including the Headway community onto your hub will broaden the readership numbers, likewise the chance of someone recognizing a symptom or three.
Headway has members with various serious brain issues and their assorted experiences are generously and kindly shared. The hints and tips often posted might also prove helpful for you.
Hi, my initial thought was how is your B12, but I see you are diagnosed with PA. Which doesn't unfortunately mean that you are getting adequate treatment - how often are you injecting and what is your folate level like and have you recently had either homocysteine or MMA checked? If you have had a virus/covid/vaccine(s) it may have thrown your one-carbon metabolism and you may need more B12 and/or folate. But that is most unlikely to show in serum. (Unless you've had a nitrous oxide exposure? which should show as low active B12 if you do a holo tc test). There is an awful lot in posts and profile which could be B12 related.
Next thought was are you coeliac or gluten sensitive? Coeliac testing misses a lot of people, so if you've been checked and it has been ruled out, unless financially you can do better testing yourself, it might be worth an elimination diet. Helped me enormously. With such a bucket load of autoimmunity, it may well be one of your underlying triggers, as it was mine.
I see you have got cerebellar issues (which may be gluten related) and have had head trauma, so you might find Datis Kharrazian's 'Why Isn't My Brain Working' an interesting read.
You are taking a lot of medication, necessary no doubt, but it might be worth looking at nutrient depletion with the combination of treatments. Some medications further deplete vitamins/nutrients - like gabapentin with B12 and folate, and paracetamol with glutathione.
I appreciate the reply! My B12 is actually extremely high because of the daily activated B12. I have had the gluten sensitivity test and was negative but I do a rather strict diet to reduce things like that. I also take daily probiotics to help ensure a healthy gut. I did get the Covid vaccine and got the virus twice after too - lol.. the neurologists won’t rule out this being CTE related but she thinks that is simply a “catch all” when they can’t figure anything else.
Unfortunately I can’t get spinal taps because of the frequency with which I get blood clots. So there are some tests they can’t run as well.
No problem! Yes your serum will be high if you are having daily B12, although if you have for example a genetic metabolism issue, it may still not be being used well cellularly. (I am in the process of being checked for that). MMA is venous blood or urine, homocysteine is venous blood, so you could possibly still check that the covid hasn't affected the methylation/folate/one-carbon cycle as it seems to be doing in many. (This may interest you sciencedirect.com/science/a...
Sounds like you are doing what you can diet and gut-wise which is great. Hope you soon start to make some improvement. Cheers
I have neurological pain that came on 2years ago for no apparent reason. Its undiagnosed as anything other than "you have pain". The pain includes tingling, stinging, numbness, hot/cold and other unwanted sensations that are all over my bodt. It was and still is at times unbearable. I also had vision difficulties, hallucinations overnight, dropping things as well as confusion and agitation. When it started my emotions were up and down. I had tests for everything including scans and blood tests. I saw consultant neurologists for MS, MND etc. Nothing was diagnosed; other than you have pain.
I take gabapentin to help the pain., but the core symptoms still exist. However much has improved by me following self-researched pain management. It doesn't take the symptoms away, but it helps you cope more positively and especially reduces the emotion issues. I also found it helped with the vision, hallucinations etc.. if nothing else by getting a good night's sleep- which is a wonderful thing.
A lot of people do benefit from pain management, but a lot of people dismiss it as "its not in my head". My pain isn't in my head but I can help my body and mind combat it better.
I appreciate the reply! I am sorry to hear you are having to deal with the pain! I can sympathize…. I am on Vicodin and have a spine implant to attempt to deal with pain (gabapentin didn’t work). I have to take medicine to sleep but it doesn’t work either - I was told because of potential atrophy or inflammation to certain parts of the brain. Good times 😉
I'm sorry to hear that you are dealing with so much and glad you are finding ways to cope. I am sure that you have had far more tests than you would like to have had but purely from my own experience I would be suspecting that they have missed a B vitamin deficiency with those symptoms. It has taken me 22 years to get to someone who would consider doing full testing, and this is after the latest two neurologists admitted that they didn't know enough about B12 and folate in particular, so referred me. The genetics is complicated and constantly evolving, and the intricacies of how the 8 B vits work together is staggering. I have a Small Fibre Neuropathy diagnosis now and more tests still awaited. Have you seen Adult Inherited Metabolic Diseases and have you had homocysteine, MMA, intrinsic factor antibodies, gastric parietal cell antibodies and serum gastrin all checked? I see you probably had a thyroiditis too, so this could have had a viral trigger (like EBV, which my neuro thinks is playing a part in my very similar symptoms, as does gluten sensitivity in my case). Might be worth keeping an eye on your thyroid if you have family issues - both antibodies and actual hormone levels not just TSH. Medichecks for example do a decent home fingerprick test with TPO ab, Tg ab, TSH, FT4 and FT3 (and one with vitamins if not done for a while). We actually need sufficient thyroid hormones to activate vitamin B2, and without B2 cannot properly use B6, B9, B12....making methylation problematic. I didn't get on too well with gabapentin and it can actually deplete B vitamins, so after about 14 years I stopped using it (slowly!) and now use magnesium quite effectively instead (in conjunction with other coping strategies, like yourself). Best wishes
Many thanks - and yes I had thyroid issues just before the pain (and a family history of thyroid issues). I am vegetarian and have had comments from Drs about B12 issues causing peripheral pain throughout my life when scans showed it wasn't spinal. But B12 always measures well. I will investigate further ... many thanks
I really hope you can make some progress. B12 deficiency can be tricky to pin down and is so often overlooked. Here is a bit of the genetic stuff in case it helps genesandnutrition.biomedcen... and ncbi.nlm.nih.gov/pmc/articl.... Best wishes
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