Feeling hopeless with no answers to neurological symptoms

[gingerbears]

I’m feeling so low because nobody can help me. My blood tests are all normal and nothing was picked up on my head and spine MRI scan. My symptoms are:

• constant left leg buzzing / vibration. All the time!
• Pin prick sensations anywhere across the body. Lips, legs, arms, cheek, torso. Like little needles poking me. Often on the side of my lips.
• Random feeling of water droplets on me, but nothing there
• Both feet and lower legs feel freezing cold but not to the touch / tingly
• Feeling of having a hair on my legs that isn’t there.
• Muscle twitching, mainly in calves and thighs but can happen anywhere.

This started in April and I have no answers. I am feeling so down and depressed. I am sure these are MS signs but my MRI and EMG was normal?

The neurologist I saw said he does not think it is but what else could it possibly be with normal bloods and symptoms like this? I am so down about it. It’s taking over my life.

Are you on any medication?

@ButtSurgery hello, no, no medication.

Did the blood tests include a screening panel for autoimmune disorders?

@CoffeeBeansGalore yes, had multiple blood tests including these. And all deficiencies- all normal.

Sorry you're going through this. It's horrible when you are suffering and no answers are forthcoming.

Have you had a nerve & muscle function test? Unpleasant but can give answers.

Have a look at benign fasciculation syndrome, could be caused by a whole load of things, the after effects of an infection, stress, medication. Symptoms all over your body tend not to be anything serious. For some women I think it can be linked to hormonal changes. I had very similar symptoms, and I thought I had something terrible, but they've pretty much gone now.

I have a rare neurological illness and it took months to get an answer. You've mentioned lots of tests but have you had a lumbar puncture? It's a bit unpleasant but good for getting answers. Also some things show up better on CT than MRI, or so I was told (I had both!). It's good that your EMG was clear.

If you are losing function in your limbs then it's worth getting to see the physios or occupational therapists, who can help a lot with living with a neuro illness.

All the best and feel free to pm me if you want x

Yes I've had the nerve conduction tests :(

It's so horrible.

@TheKneesOfTheBees I have looked into this but don't think the symptoms match. How long did yours take to clear up?

How's your speech?

Could it be reaction to the covid vaccine or covid itself?

functional neurological disorder? i get things like that and Dr said FND. It is stress triggered for me. worse when under stress.

I don't think there are any standard symptoms, it presents in lots of different ways, it's a diagnosis of exclusion really rather than a specific thing - just that there's not anything specific and serious wrong. Mine took a couple of years maybe to settle down, I still get a bit twitchy when I'm tired and stressed though and I have a continual weird sensation in one shoulder. It's 10 years since it started though and nothing serious has happened and it's got better rather than worse.

Speech is fine. No muscle weakness or anything like that.

I had covid about 8 months before it all started so I really am not sure that is linked? It was a mild case as well.

One doctor did mention FND but I just feel like that's kind of what they say when they don't really know :-(

Glad to hear yours did not get worse @TheKneesOfTheBees - that is reassuring.

@weegiemum sorry to hear that. May I ask what it is you have please? I hope you are okay. No, not had a lumbar puncture. I'm petrified of having one, sounds really unpleasant.

Just clutching at straws here but has it been considered that it could be allergy related (food or something else)?

These are very classic symptoms of untreated B12 deficiency/pernicious anemia. I know you were tested for deficiencies, but do you recall if your B12 was on the low end of normal?

I was thinking FND as well which is why I asked about the speech. Doctors don't suggest it when they don't know! This isn't like when a kid is ill and they say virus.

Lumbar puncture sounds worse than it is. The after effects of my 2nd one were worse because they had to take extra fluid. Headache & nausea lasted about 4 days. But the doctors I had were really gentle & very kind. Wouldn't look forward to another one but wouldn't worry about it.

There will be people with bad experiences as well but mine was ok.

@CulturalNomad my b12 levels were 511ng/l (200-771 being the range?)

I do have PA but am definitely not an expert! My B12 levels were in the normal range (low side) when I was diagnosed (positive for intrinsic factor antibodies).

Would it be reasonable to try a series of B12 injections to see if your symptoms improve? Has the doctor ever discussed this? PA is notoriously tricky to diagnose since blood levels can be deceiving.

I have MS, and yes your symptoms sounds a lot like MS. I've had a couple that you are describing. But with evidence on an MRI they won't diagnose you with such. Have you had a lumbar puncture?

Possibly fibromyalgia. Or they will diagnose you with FND (functional neurological disorder) which basically means they don't know what it is.

Please stop talking about FND like that. It's not the reality.

Lumbar puncture I had was fine, didn't even hurt. No side effects

I had identical symptoms OP - Vitamin B12 deficiency

What do you mean?