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#519706 - 06/12/19 07:54 PM MS and neurological symptoms
Wilhelm Offline
First_Degree_AS_Kicker

Registered: 10/02/12
Posts: 190
Hi everybody,

Ok so I’ve been on Enbrel for almost 7 years now. Never had a single side effect.

8 days ago I woke up mildly dizzy out of the blue. As the day went on it kinda got better so I thought nothing of it.

Then when I was getting in bed at night I had a sudden weird sensation in my thigh that I could describe as something like a hot flash but cold. Not sure if it was a blood rush as my leg was bent but it felt weird.

So I looked up the symptoms on Google and yeah... big mistake. Found a lot of stuff about MS. Freaked out completely. The next day I felt like my limbs were weak and clumsy and my anxiety level skyrocketed. I only started eating and sleeping properly two days ago. So I had 5 days of panick attacks, no sleep, almost no food and I felt weak which I attributed to MS that I thought I got from Enbrel.

I went to the doctor yesterday cause I’m stil mildly dizzy and I have strange sensations all over like someone flicking water on me.

The GP did a neurological exam, reflexes, eye movements, walking on tip toes, all that jazz. She said everything was normal and that there is nothing indicative of MS so she didn’t want to order an MRI. She says my symptoms don’t sound like MS cause they are very mild and also MS wouldn’t present as small tingles all over that last a second but more like a whole leg tingling for hours or days.

She ordered complete blood tests to check for vitamin deficiencies, diabetes or thyroid problems. I broke down crying cause I feel like I have MS and no one will take me seriously. I still have dizziness, heavy legs and weird sensations but the GP attributes this to extreme anxiety, tiredness and somatization. She gave me lorazepam and sent me away.

Does anybody have MS or MS-like syndrome that they got from anti-TNF? Can it happen after that many years of no side effects and do my symptoms sound like MS at all? I’m going crazy. I’ve read about a girl online who felt the same « Water flicking » feeling and had MS. But some other guy had the same thing with just B12 deficiency....

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#519707 - 06/12/19 09:24 PM Re: MS and neurological symptoms [Re: Wilhelm]
tvmanjon Online   content
New_Member

Registered: 01/24/19
Posts: 15
Loc: Michigan
I have been on Enbrel for 20 + years.1998 to be exact. It just came out and was able to convince my Dr to write the script. Its a simple tnf inhibitor. Stop freaking out. If it last for more than a couple weeks then get serious. These things normally run their course without explanation. Go out and get some sunshine and drink a good 1/2 gallon of water a day. It will pass

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#519711 - 06/16/19 02:53 PM Re: MS and neurological symptoms [Re: Wilhelm]
Wilhelm Offline
First_Degree_AS_Kicker

Registered: 10/02/12
Posts: 190
Still dizzy.

FML.

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#519714 - 06/17/19 09:55 PM Re: MS and neurological symptoms [Re: Wilhelm]
iamhealth123 Offline
Member

Registered: 01/22/19
Posts: 37
Hey! How are you feeling Wilhelm? Is it neuropathy? Keep us posted


Edited by iamhealth123 (06/17/19 09:56 PM)
_________________________
Diagnosed with AS 2018, MRI Sacroiliac joint: HLB27 +: uveitis
NSAIDS,
Peripheral (hands, jaw, knees)
LSD - 2018, NSD - 2019, AIP June 2018

Some nuts (not me, what I eat)
No dairy
Some egg
Some low carb fruit


"a laptop scientist and everyday researcher committed to health"

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#519722 - 06/22/19 10:36 AM Re: MS and neurological symptoms [Re: Wilhelm]
Winter Offline
Warrior_AS_Kicker

Registered: 12/01/10
Posts: 452
Dizziness could be indicative of POTs. I have POTs and small fiber neuropathy. I don’t have MS. I would see a neurologist who specializes in autonomic dysfunction or small fiber neuropathy if it continues. I have always had issues with biologics in the past.

Sorry you are dealing with this.

Shari
_________________________
Meds -Prednisone, Stelara, leflunomide

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#519729 - 06/28/19 01:28 PM Re: MS and neurological symptoms [Re: Wilhelm]
Wilhelm Offline
First_Degree_AS_Kicker

Registered: 10/02/12
Posts: 190
What kind of issues? Can you tell me more about your symptoms?

I saw another doctor in urgent care who evaluated me for neurological problems and diagnosed me with extreme anxiety...

Meanwhile symptoms continue and I'm panicking. If it's Enbrel causing this, is it possible that the symptoms will stop once I stop the anti-TNF?

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#519763 - 07/10/19 06:20 AM Re: MS and neurological symptoms [Re: Wilhelm]
Winter Offline
Warrior_AS_Kicker

Registered: 12/01/10
Posts: 452
I have tachycardia so I am on heart medicine. I also have neurogenic bowels and bladder and have neuropathy and loss of sensation. I have been recently diagnosed with Lyme disease. I ended up getting the POTs diagnosis after getting a tilt table test. Neurologist diagnosed me with autonomic dysfunction. When I first started getting numbness and tingling, I also got diagnosis of anxiety disorder from my first neurologist. Got second opinion from professional therapist and she said no anxiety or depression. I would see a neurologist who specializes in POTs if your symptoms sound similar to mine.
_________________________
Meds -Prednisone, Stelara, leflunomide

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