Connect
Presumption: autoimmune disease affecting brain
Hello,
I am making this post because I am uncertain what decision to make as I do not understand the urgency of the matter. For some years now I have not being doing well mentally which has made me completely dysfunctional-- I am not capable of working nor studying.
6 months ago I had experienced mild and short visual hallucinations, it resolved within hours. I didn't think too much about it. 2 months later, however, I started having aches and problems with my short-term memory (remembering rather than absorbing information). Furthermore, for the last 3-4 weeks, I have been experiencing headaches and violent behaviour. The headache has become really bad and it feels like my head is going to explode from smoke kind of pressure and my vision has become impaired. I also had moments where I felt dizzy.
I have been to the emergency room where they gave me corticosteroids as they suspected a rheumatic disease. It worked almost immediately and the relief I had experienced was immense (I was only there over body aches). This was for 2 days only though as an experimental treatment.
They sent me back to my primary physician for further testing because nothing has come out positive. I made an appointment, but it was 3 weeks later. I have been waiting 2 weeks already and have to wait another full week to get tests done. I've been to my physician for more corticosteroids at least until the next appointment but he refused to give the same dosage, instead he suggested to slowly come off the medication instead. I am now taking 5mg prednisolone and it basically does nothing. I also went back to the ER but they refused to help once I have mentioned I had psychological issues because "they're not a psychiatry."
Should I try to patiently wait or seek immediate help? I get some relief from the symptoms very late at night and mid-afternoon it starts building up again, getting worse with each and every day.
Like
Helpful
HugInterested in more discussions like this? Go to the Brain & Nervous System Support Group.
Connect
Hello @anonuser1 and welcome to Mayo Clinic Connect. All of your symptoms and your experience so far are certainly something concerning. I can understand your struggle to want to continue the use of the corticosteroids given that you experienced such relief. Sometimes, finding relief through the proper medication takes considerable time but to have found something that does appear to work well, would make it even more difficult not to be able to continue to take them while you wait this last week for some more answers in terms of a diagnosis. I wonder if the prescribing physician explained the reasoning for why he/she thought you would benefit from corticosteroids as a way to justify continued use until you learn more? It seems he/she was onto something.
-
Like -
Helpful -
Hug
2 ReactionsHello, as I have stated before, I was given a small dose of corticosteroids in the hospital to see if it would have any effect on the symptoms I was experiencing. I failed to mention it in the post, but I have also been having a light-grade fever daily along with the aches. With my primary physician I do not get along well-- and it is very difficult to find another in my living area-- so after a lot of obsessing, anxiety and paranoia, and a lot of dismissal from my family doctor, I decided it was time to go to the ER and I couldn't wait any longer. Here I had to wait for a couple of hours, but when I got in line, I described the aches I was having-- and I also mentioned the fever--and a physical and neurological exam was performed and the expert hypothesized a form of rheumatic disorder. Later blood was drawn, the results were negative however, and I was given a letter to go back to my primary physician. After a bit of questioning, I wasn't told which exact tests were performed, nor what additional tests still need to be looked at.
The short time I was under the effect of this medicine (20mg prednisolone) I started to feel healthy again. It also became very apparent to me that not only did I have aches and fever, but I also had:
- difficulty breathing
- severe agitation
- severely impaired cognition
- suppressed emotional processing
- severe weakness, fatigue and extremely poor sleep
- impaired vision
to name a few.
This makes me wonder if the condition is directly affecting my brain. I find it to be very logical. Over the years I have been doing so poorly that I sought psychiatric treatment, none of which I had success with (note: and when I just had a single dose of prednisolone, my mental health improved within hours and I could do both mental and physical work again-- nothing could ever compare to the efficacy this had) and I was often given the blame that I just didn't try hard enough to get better. Ultimately, I completely dissociated from many sensations and experiences to the point I just ignored my well-being and looked to spend the day however mindlessly I could. The state I am in I can no longer imagine being in after such a long time. This also makes me question, how much of my dysfunction was psychiatric in nature in the first place and if this has been going on for years, could it have caused permanent irreversible damage? What I am most concerned about is my distorted perception of time, space and derealization and depersonalization.
On the other hand, what makes getting help immensely difficult is that I have forcefully been given the diagnosis of (prodromal) schizophrenia by the psychiatry I have been at, despite performing on many cognitive tests better than average and having no delusions nor hallucinations. I can somewhat understand the conclusion but it simply does not add up and I have been fighting since for that to be taken of my record. Nevertheless, the exact reasons are irrelevant, but I believe this is now constantly making me face some kind of stigma or prejudice when people become aware of this medical background as I am preconceived now as a person who doesn't have the ability to comprehend normally.
-
Like -
Helpful -
Hug
1 Reaction@nonuser1
I read your posts and can certainly understand your desire to get the right diagnosis. It is frustrating to search for answers and to come up with nothing but more questions. Is it possible for you to get a referral to a rheumatologist? This might be a good first step.
Have you been seen by a rheumatologist yet?
-
Like -
Helpful -
Hug
1 Reaction