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Super-crash after vac - neuroinflammation (?) and heightened nervous system

judyinthesky

Senior Member
Messages
361
@PisForPerseverance what I know is that my condition always flares up if there are any intruders from outside.

I don't know. The doctor had a same idea. She said that they would check for all neuro antibodies. With not getting out I meant my fluid from my spine. Whole procedure drained me very much, so I will leave more exhausted and weaker here then before.
 

lenora

Senior Member
Messages
4,913
Hello@judyinthesky. I'm sorry the lumbar puncture/spinal tap was hard on you. It could be that it was the "last straw" so to speak. The leakage is most unfortunate but it can and does occur. The headache (which I've experienced) is also a terrible side-effect.

Spinal taps are done to remove excess fluid, but mainly to look for infections and other sources of problems. They're a necessity in some of our cases. I'm sure you'll have more than one opinion on what you should do...and of course you're fatigued if you aren't sleeping even. Hospitals are terrible places for that to occur, aren't they? Even doctors readily admit it and try to get you out the door asap.

May I ask if you've had MRI's, CT scans and even x-rays performed? I know I was extremely depleted after my last hospitalization, but it was my 8th in something like 9 or 10 mos. I'm only just now getting back to outside walking (very slowly) and make a point of eating the proper nutritious food. Of course I now have added specialists (and more next week), meds and things to still figure out.

It isn't uncommon to feel alone and unheard while you're in the hospital...and your thinking can seize up, it does happen. You'll be able to make a more comprehensive list when you return home. Use the Patient Portal to send in a list of questions that you want your doctor to answer. This will probably take 10 days or so, but is probably the most effective way of getting what you want.

Don't forget to get copies of all records, CD's of different tests and then see your neurologist or internist (the only one who really knows the entire body as such). Yes, the others are specialists, and they'll readily tell you that fact. Neurologist are the most highly trained and are at the top of the medical hierarchy...so if you find one who patiently explains things and will share his knowledge of the body, then stick with him/her. The younger ones just starting their practices are often the way to go. They're still in a learning mode, have time and they won't be retiring on you.

I wish you well. Hope you'll be out of the hospital soon and can then rest in your own bed. It's the best place when we're ill. Yours, Lenora.
 

lenora

Senior Member
Messages
4,913
Hello Everyone.....Judy, is it possible for HEPPA waivers to be signed by you and someone else can pick up your tests and results at your hospital. Keeping your own file is the perfect way of having ready access to everything. As far as I'm concerned, the only way.

At some point I'll back off, but not yet. It helps me to understand what happened, the tests that were performed, who ordered them and why. Very important info is contained therein.

I've found that I can gain CSF tests within a few hours....and that has helped immensely, especially over the past number of mos. wherein it was used to help diagnosed Autoimmune Encelphalitis (see, I just remembered that). Of course there are other uses, too....but it helps to know what has been ruled out. Yours, Lenora.
 

judyinthesky

Senior Member
Messages
361
Hello Everyone.....Judy, is it possible for HEPPA waivers to be signed by you and someone else can pick up your tests and results at your hospital. Keeping your own file is the perfect way of having ready access to everything. As far as I'm concerned, the only way.

At some point I'll back off, but not yet. It helps me to understand what happened, the tests that were performed, who ordered them and why. Very important info is contained therein.

I've found that I can gain CSF tests within a few hours....and that has helped immensely, especially over the past number of mos. wherein it was used to help diagnosed Autoimmune Encelphalitis (see, I just remembered that). Of course there are other uses, too....but it helps to know what has been ruled out. Yours, Lenora.

Yes the report is still to come. In Europe.
I have basic reports from the spinal tap CSF, including protein etc.
Apart from some minor blood it's fine.
 

judyinthesky

Senior Member
Messages
361
Oh my goodness that is a lot of neurological symptoms. I would not put this down to ME. And be content with leaving it at that. It would be great to get the diagnosis but you've clearly had a strong vaccine induced neurological event, and it really needs to be investigated as such until you find your answers, hopefully. Now and the next few months are the most crucial. Leaving it as ME after this vaccine induced neurological event would leave you probably without much treatment. You're having symptoms far beyond PEM. So I hope that you keep investigating and asking to be investigated for answers, even if this hospital visit comes up with little.

Greetings to the hospital! We're in mid pm conversation but I wanted to reply here too.

By the way @PisForPerseverance
Nothing was found in the hospital regarding the vaccine induced event
I tend to be unlucky with a very weird form of ME or nobody can figure out what else is going on!