Foggy's "Invisible Illness" Support
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Help! Mystery Illness.

Help! Mystery Illness.

Hey Everyone

I'm new here but I've come out of desperation really I've been having Neurological and Bodily symptoms since January. It was a slow onset and it continues to progress throughout my body. I'm not sure if this is an illness or something structural in my body causing but I'm hoping someone out there will recognize my symptoms and help me gain some control or understanding as to what is happening.

- Started with headache on left side of head pain in neck and back, feeling like it was a struggle for my heart when I was walking home from work (a short 20 min walk) and feeling out of it and foggy. Tiredness.

- symptoms then snowballed to palperations, vertigo, brain scrambled feelings, drop in heart rate, tenderness all over my chest, jaw, neck, back, shoulder.

- Feeling like my nerves were buzzing and throbbing

- Then came the sensation loss. I can feel touch and hot and cold on my skin but I CAN'T feel my own body temperature, can't feel my bladder being full, Hunger, Palpertations. I can't feel anything in my head at all not tiredness, stress, pressure, blood nothing.

- I basically can't feel anything in my muscles if someone gave me a massage It would only be sensed on the skin I feel nothing underneath.

- The sensation went slowly bit by bit so it started with behind my head where the main throbbing was taht suddenly went.

- Next the Scalp and Chest just died I felt it go in bed it was the strangest most frightening feeling to go from a racing heart to nothing. I had trouble breathing for a bit after that happened. My head went at the same time and it was like a light going out.

I thought it was stress but then bit by by bit I lost INTERNAL sensation all over my body. The last bits to go were in my ears and little bits around my eyes and my anus and vagina.

-The loss seems to come when I've been actively sitting up or moving around too much.

-I have a strange tightness that runs from the base of my head behiny my ears all the way down my back, under my arms and under my ribs is even sore and tight. It never relaxes even when I am. I think this tightness is what causes the pulling.

- I can't pop my ears, have tinnitus which has gotten lighter in tone as I lost the sensation in my ears. The way I hear sounds has changes I have full range but it doesn't travel in my ear properly.

- Eyes twitching - this has calmed down as i've lost sensation but still happening. My vision is sensitive sometimes other times it feels lkike i'm looking at my nose or everything dull or bright changes like my other senses

- I don't sleep well it's like my brain is always switched on and I can't lay on my left hand side otherwise I jolt awake suddenly

- Allergic Rhinitis my nose is completely blocked with inflammation. No infection but no steroid or antihistamine work on it

- If I bend over to door chores I cough and feel a tightness in my airways and like a flipping feeling. I was bagging up laundry and a was coughing and spluttering so much I had to lay down. If my back is pressed In the middle I cough too.

- Have these little painful slightly raised bumps on my ears I'm not sure they can be seen but they hurt to touch and flare up periodically

- Jaw pain on and off

- pain in my back is constant but flares up middle feels like it's in the bone and around it. Top of my spine at the base of my neck feels like in the bone. Lower back is central but also in the hip too.

-Shoulder has a solid feeling on the left side and I get so many knots. I tried to get them out the other day and they're back again straight away.

- My bowel isn't working food

- Taste and Smell change daily sometimes I taste salty tastes more sometimes sweet but my taste feels muted no matter what.

- I have had three flare ups where it feels like my whole nerve system is electrified the most recent was last week. When it happens it feels like every nerve is buzzing and twitching even in my head it feels like it scrambles my brain. When this happens my body seems to work better but everything is over stimulated as the nerve buzzing dies down my body doesn't work as well. now I can't feel much inside the buzzing is less intense and feels quieter but I can still feel it, it just isn't affecting me as badly as when I could feel all the sensations.

- Anxiety / Depression - symptoms which flick on an off as randomly as the nerves do

So i've had ECG, FBC electrolytes done by the doc - ALL FINE

I got mineral and Thyroid tested myself ALL FINE

I had a negative Lyme test

I've given up Alcohol, Caffeine, most bad sugars and eat relatively cleanly on a GF diet.

I'm waiting on bloods for allergy testing for the nose issue.

I'm seeing a Neurologist this week with hope to getting somewhere.

Any help of suggestion on what else to investigate? My GPs are awful and it took a Psychologists letter and 2 trips to A&E to be taken seriously. So I'm figuring wisdom of experience is out there and might help me find a way to manage this condition which seems to deteriorate weekly.

I have previously had meningitis and was diagnosed in my teens with CFS but have not had an episode for 15 years and I can tell you this feels so very different to that.

Many Thanks in advance for any advice or help offered.

J x

Thyroid results

NHS Thyroid Function FEB

TSH 0.97 (0.2 - 4.0)

T4 14.5 (10 - 20 )

Thyroid Function SEPT

TSH 1.19 (0.2 - 4.0)

T4 15.9 (10 - 20 )

TOTAL THYROXINE(T4) 80 (59 -154)

Free T3 4.5 (3.1 - 6.8)

Thyroglobulin Antibody <10 (0 - 115)

Thyroid Peroxidase Antibodies 11.8 (0 - 34)

Vitamins and Minerals JUNE

Magnesium 1.07 (0.6 - 1.0)

Vitamin D 76

(Deficiant <25 25-49 Insufficiant 50-200 Normal >200B Reduce dose)

Active B12 114 (25.1 - 165)

Folate (serum) >20 (>2.9)

2 Replies

Are you in the UK? The units on some of your labwork look different than what I am used to seeing in the U.S. For example, your B12 is reported as normal at 114, with a normal range given as 25.1 to 165. In the U.S., "normal" B12 is "above 200"; which is way too low, as deficiency symptoms can exist with a level of 500. So I'm having difficulty interpreting your labs. Also, have you had a CT scan? A neurology consult? Nerve conduction studies? Whatever you've got, it is clearly out of the range for a G.P., and he/she needs to send you to specialists. It took me six years to get my "mystery symptoms" diagnosed. It turned out to be dysautonomia, or neuropathy of the autonomic nervous system. My symptoms are not like yours, but the areas affected overlap, and different people might have different symptoms from the same disorder, so that is something to look at also. I wish you well. Don't give up.


Judmilla - the B12 Test was the ACTIVE B12 test which has a different range :-)


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