35 Male post viral sensory neuropathy/NLD-SNF, 6 months and scared. My story

Atticus · 09-24-2020, 01:11 AM

Good morning prehisto,

Sorry to hear of your terrible experience. You have it bad. You really have suffered over the last seven months and I hope you find some answers and a resolution of your health problems.

Non tolerance to coffee? or Caffeine? That's awful. Can you drink green tea? Can you ingest caffeine through tablets?

You mention blood work. How are your vitamin levels? B12? B1? Vitamin D?

This is an excellent resource below....

Chronic Fatigue Syndrome and Fibromyalgia

You are not a worthless human being, you are, temporarily, ill. Who you are and what you are experiencing are separate entities. Stay strong.

prehisto · 09-24-2020, 04:29 AM

Quote:

Originally Posted by Atticus

Good morning prehisto,

Sorry to hear of your terrible experience. You have it bad. You really have suffered over the last seven months and I hope you find some answers and a resolution of your health problems.

Non tolerance to coffee? or Caffeine? That's awful. Can you drink green tea? Can you ingest caffeine through tablets?

You mention blood work. How are your vitamin levels? B12? B1? Vitamin D?

You are not a worthless human being, you are, temporarily, ill. Who you are and what you are experiencing are separate entities. Stay strong.

Hello! Thanks for the support.

I can drink tea, it seems that there is somekind of threshold of caffeine which makes me feel good- alert but in the same time makes these symptoms incredibly worse.

D vitamin was very low but i got it back up. Did not test for b12 but tried to supplement it in large doses. Noticed that it helps a little with fatigue but nothing else.

Yes, have been reading up on CFS but nothing that usefull. Currently i just want to get diagnosed with neuropathy to get some treatment.

Atticus · 09-26-2020, 04:18 AM

Hey Prehisto,

How are you?

Have you thought about starting your own thread with a little more background to generate more support from this site?

My thoughts are you have some kind of autoimmune disorder somewhere on the spectrum and that a specific diagnosis is not always possible and that the self help measures you can initiate will be the same anyway. There's plenty of information here. Go for it.

Take care,

Atty

LeedsLad84 · 10-02-2020, 04:36 AM

My 8 month anniversary of this today

HaveMercy · 10-02-2020, 10:50 PM

Hi LeedsLad84,

I am sorry this is not a good anniversary. I have been following your post with keen interest, as my situation is very similar to yours. I keep hoping you and others will post the great news of healing, to give me hope. I still can't believe how quickly these full body symptoms of mine came on. Only thing we can do is try to hang in there.

Ds293 · 11-06-2020, 12:53 PM

You guys in the UK are lucky you have all of these resources. I'm a student and not working and I can't get insurance. Insurance in the states is insanely expensive. I had to pay $450 for my EMG that showed nothing and I still have symptoms from the EMG itself. I don't have an actual PCP just a friend of mine but i can't get any testing done because i would have to pay for it myself out of my life savings! This is the system we have in America

LeedsLad84 · 11-13-2020, 01:29 PM

Hey everyone

Thought I'd check in. Generally, things are improving albeit slowly. Previously I used to have a lot of odd things like feelings of wetness, hot/cold spots, etc. which seem to have subsided and it is now just generally tingling.

I am yet to have a day where I don't notice anything at all, but there are days where it is very minimal. I am not sure whether the Gabapentin is making a difference or if this is just occurring naturally - I suspect the latter as I have reduced the dosage and everything seems to have stayed largely consistent.

As I've read and been told on here, the journey is definitely 'patchy' and I am not even sure if I am recovering, but hoping I am. There doesn't seem to be any set pattern but what I do notice is the less comfortable days consist solely of prickling/nipping/pinching (mainly hands/feet) which last a second but are very transient and disappear. From the tracker I have been keeping, it does seem to be that there are largely comfortable days, followed by a flare up and a small block of more uncomfortable ones, and then back to normal with the cycle repeating. Thankfully, it does seem to be more favoured toward the better days for the moment and the flare ups seem to be less frequent than back in the early days where it was quite constant.

As I say, I have been keeping a diary of symptoms and marking them on a daily basis which I have found useful in monitoring overall progress. If anyone's interested, I've included it here:

13/10 - Legs/Gym. Prickling/pinching/twitching all over including face but not really bad. 3/10
14/10 - No gym. Barely any symptoms at all. 0.5/10
15/10 - Push/Gym. Very very light symptoms. 1/10
16/10 - Pull/Gym. Light prickling and tingling. 3/10
17/10 - No gym. Very mild symptoms. 2/10
18/10 - No gym. Mild tingling and twitching in hand, foot, knee, etc. 2/10
19/10 - No gym. Moderate prickling, mainly in the face area, but also pre-cramp type feeling in the right foot. 5/10
20/10 - No gym. Mainly tingling underneath skin. 3/10
21/10 - No gym. Tingling and prickling/pinching (transient and happened in leg and arm) felt a lot in the face. Also feels tight when it happens in the face. Happened the majority of the day. 6/10
22/10 - No gym. Mild tingling but overall better. 2/10
23/10 - No gym. Mild symptoms. 2/10
24/10 - Upper Body/Gym. Mild symptoms. 2/10
25/10 - No gym. Mild symptoms. 1/10
26/10 - No gym. Very mild tingling and twitching. 2/10
27/10 - Full body at Gym. Mild tingling and twitching. Also felt a bit of dysesthesia on the left side of my face. 2/10
28/10 - Bit of tingling and minor prickling. 3/10
29/10 - Some tingling and twitching. 3/10
30/10 - Minor tingling. 2/10
31/10 - Tingling and a bit of dysesthesia. 3/10

**Gabapentin reduced from 300MG to 200MG / day

01/11 - Minor tingling. 2/10
02/11 - Minor tingling. 2/10
03/11 - Mild tingling. 2.5/10
04/11 - Bit more bothersome tingling and prickling. Transient. 4/10
05/11 - Mild tingling. 2.5/10
06/11 - Minor tingling. 2/10
07/11 - Minor tingling. 2/10
08/11 - No gym. Mild tingling. Also felt a bit of dysesthesia on the left side of my face. 2/10
09/11 - No gym. Mild tingling and tickling under the skin. 3/10
10/11 - Long walk. Tingling and some minor prickling which was transient throughout. 3/10
11/11 - Tingling but also more prickling throughout which was happening intermittently in hands, feet, rib cage, etc. 4.5/10
12/11 - Tingling but also more prickling throughout which was happening intermittently in hands, feet, rib cage, etc. Mild twitching too. 4/10

Supplementation at present is:

Morning: Magnesium Citrate, Benfotiamine 300mg, R-Lipoic Acid 100mg, Acetyl L-Carnitine 500mg and B12 1000mcg Methylcobalamin

Evening: x1 Omega 3 Fish Oil 1000mg and x1 Multivitamin

* again, not sure if these are making any difference yet. I have been on them for about 2 months which may not have been enough time.

So I am currently experiencing that 'block' so things have been a little uncomfortable the last few days. I am also going to wean off Gabapentin totally from tomorrow.

Let me know if anyone has any thoughts or questions

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