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.

People keep saying doctors diagnose FND as they don't know what is wrong, as if FND isn't a real thing.

Yes this, also if you take b12 supplements it can skew your results

I definitely think it's a real thing. Just the cause is unknown. I've worked with neurologists specialising in FND, so it's definitely a certified illness. However, they have agreed that they often diagnose a patient with this when they are unsure of the cause. As often, the cause of FND is very unclear. Possibly something on a more molecular level.

FND in the past, however, has often been very dismissed, in that, it is not been regarded as certified illness, and that patient were often either delusional or making their symptoms up. I don't think this BTW. It's the history.

Very similar symptoms to me and I was diagnosed with FND.
I do agree though that it feels like a fob off diagnosis. I got a diagnosis and sent on my way. I feel like they gave up trying to find an answer.
My symptoms seem to come on intensely and then fade for a while before coming back full force.

I'm lucky as I have FND and SND and I know why. It must be awful for those that don't know the trigger or cause of it.

But don't be fobbed off. There is help out there. I've just finished five weeks of group support and while I'm not as badly affected as some others, emotionally it has been a help.

There is still a lot to learn about it, by its very nature, but that doesn't mean it is a fob off diagnosis and there's no help.

With your bloodtest did they test your Gamma-glutamyl transferase (GGT) levels?

Your symptoms sounds similar to mine diagnosed with ME (CFS) with a crossover of fibromyalgia. ME can mimic MS without any test results to confirm.
These conditions can be triggered after a virus.
I'm sorry to hear you're struggling with these symptoms 🫶🏼

I agree that the symptoms sound like a deficiency. Particular deficiencies are not part of a routine bloodwork, potassium, magnesium? Are calcium levels normal? Nothing at all showing up as out of range? Has the neurologist suggested a next step?

One of the ways FND is diagnosed is the Hoover Sign test,was this completed?

Well it is to some extent, but the reason for that is there is still so much about the human body and illness that we don't understand so people end up with diagnosises that are symptom based and not determined by a known cause/causes.

It would be good to know what blood tests you had.
Things you may or may not have been screened for and might wish to Google include:-
Addison's disease
Coeliac disease
Diabetes
Lupus
Myasthenia gravis
Sjogrens syndrome
Thyroid disease
Wilson's disease

Unfortunately you might have to wait for your symptoms to progress more for a diagnosis to be possible. Hang in there and start a diary so you can pinpoint what makes your symptoms better and worse e.g. coeliac disease will be problematic after eating pizza but lupus will likely be worse before a period.

What’s your B12 level? Did they test that?

Low dopamine levels can cause weird sensations.

I have all of these symptoms, and I have FND

I get most of the symptoms you have and I was diagnosed with functional neurological disorder(FND) and then several years later I was also diagnosed with fibromyalga,have you been tested for both?

I hope you get some answers soon,I know it's not easy when your having to have lots of tests and it feels endless.

There isn’t a test available for fibromyalgia.

Some people are very sensitive to 5G

How's your diet? Vegetarian?

Paroxysmal Kinesigenic Dyskinesia

Covid can cause neurological issues.

www.scientificamerican.com/article/long-covid-now-looks-like-a-neurological-disease-helping-doctors-to-focus-treatments1/

The sensation problems you describe a typical of neurological problems - I have FND following an accident so I am unfortunately familiar with them.

As others say, it can be deficiencies as well so it is worth getting tested for them,

I don't know why people go to FND or covid, such a cop out. Any range of small vessel heart disorders are viable here.

And fibromyalgia is partly pyschological no matter what anyone wants to put up as research.

no problem with that but own it.

@BefuddledPuck I just looked back at my hospital tests and yes they did - it was abnormal!!!!!!! They never mentioned that to me?

But then they retested and it was normal again?

What is this test for?

@Girlsjustwannahavetea hello. I think I have this but my neurologist doesn't seem to think so and said my symptoms don't typically match his hundreds of patients that do. And the MRI would typically show something.

May I ask what your initial symptoms were and what led to your diagnosis? Thanks.