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Joined: Oct 2012
Posts: 190
Wilhelm Offline OP
First_Degree_AS_Kicker
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First_Degree_AS_Kicker
Joined: Oct 2012
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....

Joined: Jan 2019
Posts: 20
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Joined: Jan 2019
Posts: 20
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

Joined: Oct 2012
Posts: 190
Wilhelm Offline OP
First_Degree_AS_Kicker
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First_Degree_AS_Kicker
Joined: Oct 2012
Posts: 190
Still dizzy.

FML.

Joined: Jan 2019
Posts: 37
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Posts: 37
Hey! How are you feeling Wilhelm? Is it neuropathy? Keep us posted

Last edited by iamhealth123; 06/18/19 02:56 AM.

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"
Joined: Dec 2010
Posts: 456
W
Warrior_AS_Kicker
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Joined: Dec 2010
Posts: 456
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 -Hizentra, leflunomide, Prednisone
Joined: Oct 2012
Posts: 190
Wilhelm Offline OP
First_Degree_AS_Kicker
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First_Degree_AS_Kicker
Joined: Oct 2012
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?

Joined: Dec 2010
Posts: 456
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Warrior_AS_Kicker
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W
Joined: Dec 2010
Posts: 456
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 -Hizentra, leflunomide, Prednisone

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