older symtoms

[Nik5322]

dear all

I had this when I was 3, I believe it was bacterial as I nearly died in hospital. Family members were also say it was 50/50.

I am now in my middling 50s and for the last 15 years I am experiencing a whole heap of symptoms. Not limiting to left side walking difficulty, I fall over. Shaking, I have been very angered, severe dyspraxia, loss of memory, word blindness, hearing loss in both ears. I have been diagnosed with unstable emotional personality disorder, oh! And fibromyalgia! The neurologist told me I have spasticity in my legs and prognosis is I am going to be wheelchair bound.

my poor hubby has become my carer and he is going out of his mind.

I had a brain scan and the saw I have a blood vessel around my nerve that is rubbing but because of where it is they can not do much.

please, please,please if anyone is out there that has either similar symptoms nor experience can you let me know?!!

My neurologist said ‘it’s faulwiring’ but was unwilling to put that in writing. Instead he said I have spastic legs😱😱

let me know I am not going mad.

Nikkix

[kitnkaboodle]

Hey, sorry to hear about your lifelong struggles, and welcome to our little forum. I can confirm that you are NOT going crazy. Even though there might be a new or related condition causing these developing problems to some degree, it sounds likely that childhood meningitis/encephalitis would also contribute.

I got sick at age 24, but I have and had many of the same conditions and issues. I also have a severe movement disorder; I don’t think you should necessarily believe that you will eventually be wheelchair-bound. Maybe we will both end up unable to walk, but, damnit, I’m going to walk as much as I can for as long as I can, even including stairs. That doctor doesn’t actually know what the future holds. Also, for what it’s worth, without knowing you, I think that diagnosis of “unstable emotional personality disorder” is nonsense. How about: you have had a very difficult life, and you’re coping as well as you can?? I don’t think these stupid labels do anyone any favors—well, maybe doctors and insurance companies like them. 🙄 Same goes for “fibromyalgia.” Thanks, doc, for confirming I have lots and lots of pain…as if I didn’t notice. (Sorry—I’m being extra sarcastic today haha)

The funny thing is that doctors tend to say things in person that they won’t write down. One of my neurologists said recently I have “problematic” brainstem circuitry. Thanks for stating the obvious, doc. Honestly, I’ve learned you can’t take everything they say to heart. Don’t let their lingo and labels freak you out. I know it’s hard when you might not understand the medical system and the doctors’ perspective. They are truly *practicing* medicine, and they don’t have it all figured out. Their words are not always gospel.

Anyway, some on here like Paula-38 , kayjay2 , MasterBaker , and kittenrescuer will probably have more insight, as they or their family members were affected at a young age.

I hope you find some good support and insight here. Also, don’t forget that the Encephalitis Society also offers online and in-person support groups, depending on where you’re located.

Best,

Kit

[Paula-38 in reply to kitnkaboodle]

Thank you for the mention kitnkaboodle.

[NebraskaTexas]

Hello Nikkix,

I'm sorry to hear about all your health problems. I'm glad you reached out to this forum. I am a caregiver to my husband that has autoimmune encephalitis.

I would encourage you to get another doctors opinion if you can. My husband has an active bladder due to the encephalitis and when the doctor ran out of options she just wanted to start changing medicines. I did not like that option and found another urologist that specialized in brain communication to the bladder. Come to find out, he actually had a kidney stone lodged in his ureter. He still has the active bladder but the medicine is helping now.

I have also heard one doctor say that his NMDA receptors will come back, one say no they won't and another would not answer the question. There is so much about the human body they do not know and everyone is different.

Caregiving is hard but very rewarding. I had to learn that I had to take care of myself in order to take care of him. During the day, I take an hour or two for myself... try to reach out to friends, and go out for coffee occasionally. The other day, our daughter-in-law took him shopping and they had a great time and it gave me a nice break. Everyday my husband asks me what can he do to help me. I always find something for him to do. And about 2 to 3 times a week, he rubs my feet. They hurt for being on them all day.

I hope you are able to find the support that you need.

Nebraska/Texas

[Nik5322 in reply to NebraskaTexas]

dear nebraska

Please forgive any typos the dicotors here have me on tablets for my personality disorder. Then more for the pain I have everyday m I am now on morphine patches and top level of pregablin.

Had kidney stones (owch) again and again. My kidney’s are end of life they said in the last letter. I have episodes of not being able to form words and shaking. In these times I feel disassociated and distant to reality.

Does you husband have any of this? I am grateful for your insight, like your hubby, Dictors are finding bit as but nothing overall.

What type of doctor would recommend?

Nikkix bromley

[NebraskaTexas in reply to Nik5322]

Nikkix, My husband came down with NMDA encephalitis in August 2020. He was in the hospital for a month. He is physically ok however he has lost 10 to 20 years of his memory, has face blindness, and short term memory loss. He knows I am important in his life however he does not remember us getting married. They have done all the treatments, prednisone, IVIG, Plasma exchange, Rituximab, Cellcept and lately Cytoxan. The doctors he sees on a regular bases is a family doctor, neurologist. urologist, Neuro-Ophthalmologist, psychiatrist and dermatologist. He has done some physical therapy but mostly occupational therapy, speech therapy and eye therapy, (He had a set back and was losing his field of vision. He has now recovered. ) My go to for most of my questions are our family doctor and his neurologist.

I'm so sorry to hear that you are in so much pain. My heart goes out to you.

Nebraska/Texas

[Paula-38]

Hi Nik5322,

I had Herpes Simplex Encephalitis the day after my first birthday. so I have a lifelong encephalitis story too.

My symptoms were a lot different to yours may be because I had a different type that has a lot to do with it. I was diagnosed with status epilepticus at the same time so from that fay I became epileptic but I didn'didn't have any mobility issues or learning disabilities.

However, I always had a slow processing speed which meant I used to finish my school work about ten minutes after everyone finished, I used to take it home to finish it off in my own time and take it back in the next day.

My memory is excellent I can remember allsorts, but I have never been able to follow a plot on TV and nobody knew why or what was wrong with me until last year .

Word finding? I'm not sure if I have that Hmm? I might do " a little bit" but it depends if it'it's something I have never heard of beore. or it might not be a common word/phrase.. I try to have to think twice as hard 22hat I'I'm going to say incase I say something impulsive or something that doesn'doesn't make sense or back to front.

I would say that encephalitis has had a significant affect on my social skills /interaction and my mental health mostly.

People often say words/phrases I have never heard of before so I sometimes ask them "what does that word mean"? if they do that. I have a diagnosis of profound Obsessive - Compulsive Disorder - OCD..

I have put several different posts up on here on different symptoms I have/had and my life from day one. Please feel free to look through my profile to view all my posts to look for something that you might resonate with.

My Story is on the Encephalitis Society website under Y"our Stories" and then go to my name. It was officially on there a few months ago now for you and others interested.

Hope you get the best support you need.

Please feel free to ask me any questions anytime.

Paula-38