Symptoms and time of day

[bzvvvd]

Hi again, second post. Does anyone notice that their neurological symptoms get worse at certain times of the day? My tingling for instance isnt there when I get up, seems to get worse in the afternoon/evenings?

[fbirder]

Although my neuropathy isn't caused by a B12 deficiency,I certainly find that it gets worse towards the end of the day. And many people on here have said that it can be particularly bad at night, even preventing sleep.

In your other post you mention a doctors appointment. Did you get a referral to a neurologist? There are 80 possible causes of peripheral neuropathy listed in one of my books. Only a neurologist will be able to tell what is causing yours. It probably is B12 related, and probably will get better. But it may not be (like mine wasn't) and the sooner the cause is established, the better.

[bzvvvd in reply to fbirder]

Hi fbirder, I did get a referral, and have an appointment with neurologist in 8 weeks time. The GP has also stopped my B12 injections (now the loading doses have finished). I am still pursuing getting the injections once every two or so days as suggested.

[greenbexy]

My symptoms such as pins and needles seem to be more noticeable in the afternoon and the evening. They're especially noticeable if I've managed to get a nap in the afternoon, I wake up with, what I can only describe as, internal tremors and pins and needles in my hands and feet. Also lying in bed at night waiting for sleep I used to get a tingling sensation all over my scalp. These sensations have decreased since I now SI every week.

[GastritisB12]

Interesting post! My symptoms are worse in the morning and up to around 2pm, but I don't know if they count as neurological. Dizziness/half awake/ dazed feeling is worst in the morning. I still have that. The other symptoms when I was really ill, difficulty digesting, feeling cold, anxiety, were worse in the morning. Those went away after loading and alternate day injections and folate.

[No_fixed_abode in reply to GastritisB12]

Out of curiosity have you ever measured your body temperature to see if it is low?

My symptoms are nearly always worse in the afternoon, they tend to improve in the evening after eating. However, I am diabetic so this may be related.

[GastritisB12 in reply to No_fixed_abode]

I have, its never been low. My extremities get cold, hands, feet. I did have a slightly raised temperature on some days in the late afternoon around 37.2C

Only after the loading doses I thought about measuring my blood sugar, but its been mostly ok. Lowest at 4.7 but its been as high as 6.7 first thing in the morning so I may be pre-diabetic.

I too always feel better in the evening, the brain fog/half-coma lifts and hands and feet warm up. And I can eat properly.

But who knows what's going on with me, I am seeing a endocrynologist who also happens to be a general physician about the morning half/coma, dizzyness. Most of the other symptoms have gone after B12 injections but this one has not gone so maybe its not all B12 but something else going on.

[No_fixed_abode in reply to GastritisB12]

I read somewhere that B12d could cause a raised temperature I think.

Same for me, although I was never properly diagnosed as B12D, it was just highly likely so I treated myself ;-). Now after loading myself for a month I certainly feel better, but that is also down to losing the beta-blockers I started in Dec, that was really not a good idea, and probably the rest I have had over the last 6 weeks.

However, some symptoms have not gone away, the temperature depression is one of them. Generally it happens on days when I am not feeling overly well to start with, and it seems to increase the brain fog and memory issues of that day and leave me even more fatigued.

I gave myself the last B12 injection 10 days ago, want to wait till the 2 week marker before I inject again, if I feel improvement then I will know it is still B12d. So it maybe that both of us need to continue B12.

Other than that I am looking at Hypothyroid, but with last measure TSH at 2.8 I don't stand much chance with the NHS.

I wish you all the best, please add it here if you find out for sure what it is!

[GastritisB12 in reply to No_fixed_abode]

Thinking back I think I had the occasional over 37 temperature even before the injections. In my case they definitely diagnosed it as low B12 it was 145 and folate was low, and iron and ferretin too. So I am on the NHS 3 monthly injections. But I did go privately for 10 extra loading doses after the NHS 6, then another 1 weekly. So far its been almost 4 weeks since the last one and I'm not too bad apart from the half asleep/ not fully there feeling in the morning/noon.

I'll definitely post if they find out what it is. I wish you all the best too and hope its 'just' the B12. I hope mine is just the B12 that would make it easy in some ways.

[Milla1111 in reply to GastritisB12]

I too have the morning anxiety. I've seen doctor after doctor and discovered that they're not very good at figuring things out. My natural path doctor is the only one who's been able to help me and fix so with Vitamins and herbs. My regular doctor pushed Xanax. Xanax messes with the brain's GABA and not good to take. I keep hearing how Vit B12 shots help so many. Vitamin IV's with mega dose of vitamin C have been like a miracle for me and have brought my energy back up after being too weak to get of bed for a year. I'm 35, thin and ran 6 miles a day and shouldn't have been that tired. My Dr thinks my adrenals might be what's causing the morning panic. Measuring cortisol 4 times throughout the day is what she's suggesting and a hormone test done at 8am. Timing is important because they fluctuate and you want to be able to compare them. She said the regular cortisol blood test isn't very good. Another thought is maybe mold? It was blowing out of my air conditioner onto me while I was sleeping. Mold can cause anxiety and a lot of other scary things if a person's immune system is down. They have 7 dollar mold tests at Home Depot but I'm told they don't measure all molds. Still better than nothing.

So many other things can cause these symptoms, so it's hard to pinpoint why. Very frustrating. I read about health non stop to try to find an answer of why I got sick. They thought it was lyme but did a spinal tap and it's not. I'm told to keep the body moving and the blood flowing. To find something that makes you happy to do each day. To find time to relax and feel good. To stay positive (which is hard when the news tries to make us upset to boost their raitings.) Get out in nature and walk barefoot. It grounds a person. To be around happy people. Get enough sun per day. Breathe deep through the nose because this can help the Vegus nerve and boosts hormones. Sounds simple but helps. The Netflix documentary called Heal is fantastic too. I hope this helps and that you get better fast!

[Milla1111 in reply to GastritisB12]

I'm told by my IV doctor that many of us don't absorb vitamins and nutrients into our gut well anymore due to the toxins in our food, water and air. It's amazing how they've discovered that our gut is connected to our brain. It took me getting very sick to realize how everything is connected and that our bodies want to heal and try to once given clean food, water, exercise and a happy environment. Instead, most doctors push pills on us.