feeling od drooping water on skin

[Shadow35]

hi. Sometime ii feel like there drop of water rolling on my leg or my arm is in a cold pool. It's last just few second. Can it be fnd. The doctor still don't know for sure and i want to ask them for more test before they decide that's in my head. I saw on internet that some people with ms have it. The scan of my head is clear but if they don't do the rest of the spine and the spinal punction how do they know for sure it's not that. I'm worried because people lool like they stop having check up with doctor after fnd is diagnosed. What happen if you have -2 diseases?

[Denise1968]

Yes exactly my thoughts. How do you know what to put your symptoms down to and did they miss something?..Ive not even had a diagnosis of fnd

[Shadow35 in reply to Denise1968]

Me they are not sure. But on fnd website i fount nothing. I found it for ms. But they just did mri of the brain nothing else.

[Denise1968 in reply to Shadow35]

Did they see any lesions? I had three white matter spots on mine last year

[Shadow35 in reply to Denise1968]

When i was in the emergency they told me everything is clear. But i'm gonna my neuro next week. They didn't do an mri for the rest of the spine or a lumbar punction. They just strock with a finger my stomack to see the reaction and they told me everything is normal. That it is maybe fnd. The thing is it happen to me a lot that the doctor didn't check for thing that is out of normal. I always need to battle with doctor even for broken finger. I can move broken finger and it's unusual. I call a center for rare decease and they think that maybe j have an hyperbolity syndrome and i'm thinking maybe vasculitis relate to allergy or SAMA. But ms could explain lot of weird symptom. The thing is they don't last and for now i don't a permanent sequel from them so they said i have nothing. Since 2 weeks, i'm seing a tinny black spot in one eye. The same i had pain when i was in hospital. I just hope to be able to convice them to do more test in less than one year. Don't want to find out to late.

[Daesin]

I have similar sensory issues. I used to think that there was a Drop of sweat rolling down my leg/Arm/neck/chest/back etc.but then it would turn so I would think it was a bug and I jump and start looking for whatever it was on my skin. I also have times where a small portion of my arm my leg my face my chest will suddenly go by bright red and burst into flop sweats. Or fire numbness or prickling sensation in a small area.

I was at one time associated with the FND but now have been told that I am having an unusual aura with migraines. It took a long time and several battles to get a diagnosis to address the issues.

They actually threw me away for a while.

My heart goes to you and I hope that they’re able to discover the cause and even better a solution. At this point in my treatment I know that I can’t trust my senses. I have visual distortions taste issues & tactile weirdness that boggles the mind. We continue to work through medications to try to find affected care.

I’ve been told by my neuro immunologist that I am unusual. And for a doctor that has spent 34 years working with the unusual… well to be placed into that category on his list makes me extremely weird, lol

Best of luck

[Shadow35 in reply to Daesin]

Each time i go in hospital they found that i'm a weird case. It's all start with the vaccin. At one time they say it's like i got all the symptom of covid without having it. My neuro always told me " i don't know" with a weird face when i ask im about my symptom. During two week i had restless leg day and night. He say i don't know. It's scary because it's suppose to be is speciality.

[Daesin in reply to Shadow35]

My saving Grace besides gnarly nystagmus was/is MRI results that show continuous lights on the same area over multiple machines and several years. It took a long time to find anyone who would help.

Keep looking for help and learn all you can. It’s your life. They get to close the file and go about their day. You have to live this.

I’ll keep good thoughts for you.

[Jillymo]

Do you have a B12 deficiency or have they checked your B12 or folate ? If not request it is done.

FND labelling has become popular without rulling other things out or doing the relevant tests. My neurologist tried to label me with FND without ruling my other conditions out and I now have a case open with Pals.

Many with B12 deficiency have reported feelings of water running down their face or limbs. Other have been diagnosed with MS to later find that B12 was at the root of their problem !

I hope you have a good Gp and consultant that will make the correct diagnosis and not just stick a label on you and look no further. Very often these things are related to a string of issues that are autoimmune related.

I wish you good luck with your investigations.

[Shadow35 in reply to Jillymo]

No they didn't check for that. My neuro told me if he find nothing on the brain mri he gonna send me back to the start to my gp. And she not good at all. I'm suppose to go back in school in 3 weeks and i'm really tired, need to sleep a lot during the day after small exercices. So i ask her for a solution to try before school to be better and she say, start school and call me back. I'm not gonna be able to last 2 weeks. There's a lot of auto-immune deceased in my family so i'm pretty sure there's something. But wich one. I'm gonna try to ask for a rhumatologiste.

[Jillymo in reply to Shadow35]

If your Dr refuses to check your B12 you could do a private test yourself.It is not expensive depending on which one you do, I did the finger prick one which also checked vitamins. ( Take a look on line )

Sounds like your neurologist is useless and just passing you back and forth without doing further tests. Keep a diary of symptom's and get copies of all results. As for you question which one there could be more than one thing going on which makes it even harder to pinpoint.

Insist your Dr does both your B12 and Folate and when you get the results ( ask for a copy ) post them on here.

Good luck 🍀

[Brokendeer]

Hi I am a long term Motor FND sufferer, but have come across a lot of other FND types over the years.

Firstly, let me tell you that there are a lot of Neuro Conditions out there and most have some kind of nerve disturbance symptoms - FND is no different, so could explain the cool sensations.

Secondly, MS is diagnosed over a period of about 3 years of monitoring symptoms and through having repeat MRI's and even with a lumber punch, there is no truly accurate test for MS. It all comes down to a `Best Guess' kinda decision made by the Neurologist - this is because there are 2 main types of MS, constant and progressive and intermittent attacks not so progressive.

As you have Auto-Immune conditions in your family: It maybe worth checking out your Thyroid via a blood test initially, then onto an Endocrinologist to rule out Hashimoto's Thyroiditis an autoimmune disease. Out of balance Thyroid can cause a lot of your described symptoms, eye, metabolism, fatigue, nerve sensations etc. Plus the Covid Vaccines are all designed to change the production of T-Cells, which are the building blocks of Thyroid Function throughout the body.

Another useful blood test would be to check your Antibodies & inflammation levels checked, always a good indication of any Autoimmune disease that maybe happening in your body.

Good luck,

Look for the calm in the Storm!

[Shadow35]

Yes they just do the basic testing. It's was borderline for myasthenie (not positive because it's more than 0.40, but more than 0 it's suppose to be positive and i have 0.32) with a ptosis, tsh normal, never check for allergic reaction. Blood test was really weird few time, gave me injection to make my blood more fluid. I have two ms close to me, sarcoidose, alzeimer, and two with chrone decease. So my chance are a little high with auto immune decease. I just don't know how to confince the doctor to do more test. I have a lot of chance it can be the hyperflexibility syndrome with mastocytose for the allergic reaction. For ms 10 years ago i had pain like electric shock on my back when someone touch me. Last few month. They said it's in my head. Never find anything.