I was VERY ill for two weeks in April but because I didn't have a fever, I was told (via phone visit because of covid-19 ) not to go to hospital, but stay home and rest. 3 weeks later at Primary care office visit I was given a pat on the hand, diagnosed with severe vertigo and told I would be better in a week or two. A month later I was in the emergency room STILL very ill where I was given a nasal covid test and cat scan that was negative for stroke. Sent home again. After months of no one listening to me, a visit to ENT , a visit to Vertigo testing, and Physical Therapy just to walk, my physio finally suggested to my Primary that I should be seen by a Neurologist. I spent 10 minutes explaining all of my symptoms to him that EVERYONE else ignored because they didn't fit with vertigo diagnosis. He knew EXACTLY what I was talking about, like I was checking off boxes (speech, memory, mood, gastro, fatigue etc). He strongly suspects that I have been suffering from Encephalitis. My question is, will an MRI or blood tests show anything this long after onset? My MRI is scheduled for tomorrow, and I'm nervous that nothing will show up since it wasn't caught in the beginning. I had to quit my good job, I cant drive and I'm heart broken because my friends and family think that I should be better by now instead of napping on the sofa all day.
Can you get a diagnosis months after ... - Encephalitis Inte...
Can you get a diagnosis months after initial onset?
Hello ImLeza, I really am SO sorry to hear that you have been suffering from encephalitis for 3 long months and that you have been passed from pillar to post which is of no help. But yes they can tell a lot from blood tests and a (Lumbar Puncture which goes with the blood tests) that you can inform your primary doctor about this too which you are entitled to as well to get the correct diagnosis quicker. Good luck with your MRI scan tomorrow.
They can tell a lot from ALL different scans together with lumbar puncture and blood tests believe me.
Please let me know how you get on.
I agree Paula. MRI should tell if there is any temporal/frontal lobe effects, especially if HSV is the culprit. (The most common). Autoimmune is a different ballgame that I am not that familiar with. The Encephalitis Society is the right place to be. Please keep us posted. Prayers. 🙏
Hi ImLeza, welcome to the community and I am so sorry to hear of your illness since April. It is very good to hear you're now being seen by neurology so your symptoms can be investigated and treated. In short, a diagnosis of the causative agent may or may not be possible - many people with a diagnosis of encephalitis do not necessarily get a diagnosis of cause (for a more in-depth answer you can email in to support@encephalitis.info, our main support service.) The main thing is that you are now being seen by someone who is listening to you, and looking into why you have been feeling so poorly for so long. They can look into inflammation in your brain, and decide on a treatment plan. Best of luck at the MRI tomorrow, and if you need any more support please don't hesitate to email in to society at the above address, or call us on +44(0)1653699599. You are not alone - we are here for you.
I'm sorry you're in such a tough spot. I hope that the MRI gave your doc helpful information, and that you're getting the appropriate medical that you need. Do note that encephalitis is often misunderstood by the average neurologist - myself, I had to see 7 before I had one that treated me appropriately. Keep pushing forward until you feel comfortable with the healthcare you are receiving.
I first started having issues in 2014 and was not diagnosed until last year (2019). I have heard from others that have taken months (and more unusually, years) to get diagnosed, too. So it is definitely possible to be caught later.
I'd like to thank everyone who took the time to answer me. I really appreciate your encouragement. My neuro appointment isn't until the 20th, so I'm still waiting to hear what the doctor says about my MRI. I'm sure that I'm going to have a lot of questions and I'm grateful to have a place where I can talk to people about daily life outside of a clinical setting. Thanks again and I'll keep you posted.
Hello everyone! Just wanted to give you and update. After an MRI and a slew of blood tests I'm more confused than when I started. Physically my recovery is amazing. I'm walking without a cane, vertigo is gone, I'm back to driving etc. MRI showed a stroke (this would be my 3rd) and blood work shows no auto immune. While that all sounds great, my CRP and Sed Rate are sky high, and the CAT scan 6 weeks into my illness didn't show a new stroke. I was obviously sick before the stroke, but now I'm confused as to what happened. Should I just be happy and try to make the rest of the after effects my new normal?
