Diagnosis, ask for advice: Hi, I'm new... - Encephalitis Inte...

Encephalitis International

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Diagnosis, ask for advice

Rom30 profile image
4 Replies

Hi, I'm new here.

I would like to ask for advice regarding the diagnosis of Encephalitis.

Any help is welcome

- - - - - - -

Age: 30 - M - 170 cm - 67 kg - Caucasian - Duration of complaint: 3 weeks - France

Any existing relevant medical issues - No

Current medications - None

- - - - - - -

I have continuous pain in the left side of the head.

My physician is not worrying, but it's been 3 weeks and the continuous pain is still here and I would like to ask for advice.

(I've been tested Covid-19 negative twice the past 2 weeks).

3 weeks ago, I tried to cure a tinnitus which started 4 months ago following an acoustic trauma (fire alarm).

I took Ginkgo Biloba & NAC supplements for 7 days, with the highest recommended dose.

One week prior for the headaches to begin, I had a cold sore on my lips - it's very uncommon for me, I don't have an STD nor do have a partner the past years.

I took these supplements for 7 days:

240 mg Ginkgo Biloba / day.

1800 mg N-Acetyl Cysteine "NAC" / day (amino-acid) Note: I don't eat meat.

500 mg Biotin / day.

I take B12 most of the time in a year.

On the 7th day, a "dot" of pain started from groin and slowly moved (5 or 10 cm per hour) to the chest, and to the neck and finally the front of the brain (left side).

I would say the trajectory is quite similar to the venous system.

My doctor said it's impossible to feel something moving.

The doctor checked my temperature and blood pressure multiple times, it's perfect.

He said he's not worrying at all, and that I was somatic (reassuring).

(I did a blood test the same day).

I waited a few days see if the pain go away, it didn't.

Paracetamol/Acetaminophen didn't seemed to have an effect.

The day following the blood test, climbing stairs was abnormally difficult (I usually run 10km twice a week),

the test showed a slightly low level of lymphocytes - the test was done the day prior feeling tired.

I had reduced peripheral vision (not aware of my surroundings), a little bit of vertigo, sensitivity to light and loud sounds, slow speech, pressure in the head, moderate stiffness in the neck...

I think it's all the symptoms of a viral infection / encephalitis, but it's mild.

Now, it's almost 3 weeks since the headaches started (physical touch/sensation, precise location, continuous pain inside the left/side of the head).

During the first week, the pain was moving around my head (crawling), I can clearly say it's "here" (physical sensation, localized). The second week was mainly the left side in the head, it's continuous.

It's been now 2,5 weeks.

The past 2 weeks or so I had multiple times swellings in the back of my throat.

I do have nasal congestion too.

I have/had hemorrhoid the past days too.

Lifting heavy object, blowing my nose, sneezing... increase pain (left side / head).

I think it could potentially be viral infection / encephalitis.

Question:

Can NAC (high dose, supplement) creates a neuro-chemistry imbalance?

Can NAC carry a virus past the blood/brain barrier?

Same question for Ginkgo Biloba?

It could be tension-headaches.

I would like to ask for advice, to identify the cause and what to do if it's an urgent situation.

I'm planning on doing a second blood test (CBC & procalcitonin).

I think of doing a MRI scan, if things don't get better.

Edit: the pain moved behind my left eye yesterday night, this morning I have swelling on the lower eyelid (conjunctivitis).

The pain generally moves around, but mainly stick in the same area (5cm above the left ear, inside the head).

Pic: i.ibb.co/dm42kHs/IMG-202104...

Thanks

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Rom30
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4 Replies
sleepless68 profile image
sleepless68

Ask for Mri and blood test asap for Hsv as it could be caused by cold sore.You dont need to have std or partner to develop hsv it can be latent and triggered by trauma which you have described.Longer the diagnosis longer the risk of life altering implications.

Ocean96 profile image
Ocean96

Hi Rom30

I am so sorry to hear you have been feeling so unwell and struggling to get a diagnosis.

Unfortunately this platform can’t offer medical advice, however the symptoms you have mentioned are definitely alarming and you are completely right to be investigating!

From my own experience. I got my diagnosis when I presented myself to A&E, I received a lumbar puncture which was what determined my diagnosis. I also had blood tests and a MRI. In my case it was definitely difficult to finally receive a diagnosis but it helped I had a good support system to help me fight for a diagnosis!

I truly hope you get some answer soon!

The encephalitis society is a fantastic resource and support - here is the link for their support page - encephalitis.info/support

Mine was diagnosed via Lumbar Puncture, although have undergone CAT scans and MRI since. (Sorry that was not clear at all- I had auto immune encephalitis- I had multiple seizures and plasma transfusion as part of my treatment- was also put into medically induced coma.

alpappy profile image
alpappy

Hi I never experienced anything like that throughout my treatment and for the four years following loss of memory smell taste yrs but no pain ...ask for an mri scan