I recently posted some things about my increasing vision problems, however, starting about a week ago I developed a heightened startle reflex, severe cognitive problems, and rapid cycling mood/emotion changes.
The mood/emotional changes are the most concerning; 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". I started getting angry for no apparent reason. Any kind of prolonged thinking (like problem solving, thinking about a complicated question, trying to recall specific details about a recent event, etc.) started making me very tired. 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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I am so sorry to hear about this sudden change in symptoms, it must be scary. Have you had a recent MRI scan? I hope you can get to find the cause soon.
She just ordered 4 including a NeuroQuant MRI. Glad I'm not claustrophobic!
Morning. I live with Complex PTSD and your ‘mood/ emotional/ startle response’ symptoms seem strikingly familiar. As your hippocampus is being affected, it could well be affected by changes there if you are not a trauma survivor.
I would access some counselling anyway, as this is a lot for you to be dealing with irrespective of mental health history. I am only speaking from personal knowledge, but I would investigate/ research all the things I have mentioned. Knowing and having a label weirdly helps x
I have RA, Fibromyalgia and hypermobility syndrome; trying to unpick things can be tricky and there is a lot of crossover. I had to medically retire from my last job because my brain fog was ridiculous. Stress also really affects my fatigue/ energy, so it’s an endless juggle.
I appreciate the reply! I'm sorry about the things you have had to deal with!! The only trauma I can think of has been physical... I have actually had 6 significant concessions (knocked unconscious from sports) and 1 major concussion (motorcycle accident on highway without helmet) throughout my life. I had been seeing a psychiatrist long before them and he had me see a therapist after just to make sure my mood/emotions didn't change. That was about 10 years ago. However, I have read that repeated trauma can catch up to you. Hopefully, the MRIs will finally show something a little more definitive this time. Thanks again!
I’m going to throw something else in the mix. Are you menopausal? are you on HRT ? Have they changed brands on any of your meds recently ? The only reason I’m wondering is when my HRT was changed from patches to pills within a couple of days I was staring at the wall and crying for no reason and mood swings like you wouldn’t believe. I was changed back to patches and the symptoms went away. I’ve also had this when other meds have been changed not dosage just brand and they’ve affected me in all sorts of ways. Menopause is definitely responsible for mood swings and concentration lapses etc etc I know with all your complex issues it may not be the case but worth a though.
So sorry just realised you are Male so menopause won’t be your problem whoops. It doesn’t mean that a hormonal issue could be a part of the cause but I’m not too sure about that ? Still think that it could be as a result of the meds you’re on. Sometimes drugs we are given can interact with others or side effects can increase the affects that they’re prescribed for. The other thing is do your rheumy and neuro talk to each other and are they fully aware of the treatments they’re both prescribing. Just a thought but maybe a med review would help.
No need to apologize. As I was reading the first paragraph I was actually thinking about my recent endocrine levels (low free T and various abnormalities in estrogen). But problem with my labs are they are literally drastically different from one month to the next. The will go from dangerously abnormal to normal and back again within a 3 month span! Actually, because of that - they are going to look at any abnormalities during the next MRI (and one of my gut?) to see if there is a reason from the drastic changes in free T.
Well hopefully that shows up something then because I know my friend who was thyrotoxic had terrible issues with memory loss and the most awful mood swings too. I’m hoping that another autoimmune disease won’t have to be added to the list and you get to the bottom of it and can be stabilised with the proper medication. Maybe an idea to keep a diary of symptoms when they occur and what they are it might really help you in the long run. Perhaps if your Free T is deranged with a diary of your symptoms may help medics to know what treatment will help you. My friend also had constant sexual stimulation too which absolutely thru her through a loop and I felt so sorry for her because she had an awful time with that too.
Hey there well I can empathise with you I have inflammatory lesions on both sides of my brain. The Neurologist told me that I have Multi Focal Leukoencephalopathy and if it wasn't for the Methotrexate I take for RA would still be struggling to have a tidy conversation - I couldn't find the words for things and I would forget what I wanted to say a lot. I really really hope you get some answers 🙏
I am personally working with a dementia patient (relative), 82 and long, long into the dementia process. The coconut oil is working for him, slowly, and sometimes dramatically!
The article above refers many other references, most particularly Mary T. Newport, MD and the work she began almost 20 years ago with her book: Alzheimer’s Disease: What If There Was a Cure?. Since then Medium chain fatty acids have been found to help with many forms of neurological problems. The article is worth the read, and the dietary experiment (from where I sit) is harmless, and could very well offer at least some relief.
Of course it does not replace what you are doing with main stream medical. And yet, my experience is that when main stream medical fails, out bodies and the right nourishment can do amazing things. Do keep in touch and share with all any relief that you find. Chances are, you will find something that works. Good health to you!
The book says to add 2 Tablespoons a day to the diet. I didn't have the book then and just began adding it in when cooking. (I had heard Mary T. Newport on an interview years ago, and remembered / switched from olive oil to coconut oil in cooking) For instance he loves eggs, so I fry the eggs in coconut oil, slather it on his toast generously, etc. Within about 2 weeks he had a supremely cognitive moment! Whereas he had been combative he suddenly looked me straight in the eye and said, "Oh dear, I'm so sorry, I didn't know I had gotten so bad." Mind you he is taking no medicine for the dementia (Doctors here say there is nothing to be done), and he has not had a lucid moment like this in the entire 18 months I have been caring for him. Of course, that moment only lasted for about 4 to 6 hours, but he was quite conversational, wanting to "catch up"! Since then he has waxed and waned. (He is in late stage, so say the Dr.s) Mostly he is calm and collected enough to want to interact with those around him. He still cannot walk, I'm thinking that he will never return to walking, but he is in good health otherwise, taking no medicine (not my choosing, but even his blood pressure is that of a 30 year old). He does have a pacemaker. More than anything he is in good spirits 75 to 80 % of the time, as opposed to 25 to 30% of the time before we began adding coconut oil. He might do even better if we could get more of the oil ingested (he won't / can't just swallow a spoonful of coconut oil). The website in the post offers exciting links to a wide variety of research being done with coconut oil for all kinds of brain healing. The brain loves fat! His appetite has increased - he takes B12 (Dr. prescribed, amazingly!), still, I think his interest / pleasure in eating has improved since adding coconut oil. These are small wins, but we have only just begun. Having even part of the cognitive function improve in such a short time, has convinced me that it was the coconut oil!
The diagnosis is officially “dementia” - but he has such a poor insurance here in the US that I’m quite sure they’re not going to any great lengths to wire down the exact diagnosis.
he does not have high cholesterol. He has no health problems other than in the brain and the pacemaker - which when we think about it are more nerve disorders than anything else right? He has a long history of not getting enough sleep having driven a truck for more than 40 years.
He has had the pacemaker more than 10 years - perhaps before the dementia became a problem. It is my understanding that pacemakers are advised when the electrical impulse / nerve that regulates the heartbeat becomes erratic / the heart begins to beat too slowly, blood pressure becomes too low. He has never had high blood pressure, never. Even now, with the pacemaker, he is not prescribed blood pressure medicine (at 82) as his blood pressure continues to be near normal or below.
Thank you for sharing. If its for a slow heart rate, then maybe he has the same thing my mom has - sick sinus syndrome resulting in a slow heart rate, for which the pacemaker was prescribed.
My mom's 87. Lately, her dementia has worsened i believe into the moderate stage with her short term memory loss significantly worsening. It took about 10 years to move to moderate, so i'm hoping to try things that might help.
Thank you for all your replies : ) It is much appreciated.
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