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Re: MS and neurological symptoms
seymour #283317 07/01/19 05:15 PM
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If you look online neurological problems with anti-TNF treatment are actually way more common than what we're told. I've been good for almost six years as far as side effects go so I brushed it off but the damage can sometimes occur silently and hit you after years.

Let's just hope that this will all go away if I stop Enbrel. Can't deal with a new chronic condition. I hate my body.

Re: MS and neurological symptoms
seymour #283460 08/11/19 04:55 PM
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So I’m having a brain MRI in two days because I pushed and pushed for it.

If I have lesions can the symptoms sometimes go away after stopping the anti-TNF and not turn in to MS? Or am I doomed to always be dizzy and tired?

Re: MS and neurological symptoms
seymour #283469 08/13/19 07:43 PM
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Any idea?

Re: MS and neurological symptoms
seymour #283475 08/14/19 03:01 PM
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Originally Posted by seymour
So I’m having a brain MRI in two days because I pushed and pushed for it.


Thinking of you and the brain MRI today (?) Asking the universe for the very best possible outcome.

Re: MS and neurological symptoms
seymour #283477 08/14/19 04:24 PM
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You may find this recent paper helpful: https://www.ncbi.nlm.nih.gov/pubmed/30767720

Re: MS and neurological symptoms
seymour #283478 08/14/19 05:06 PM
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Good luck with your MRI! I know we'd all be interested to hear the results if you don't mind sharing. I really hoping for a clean scan!


Diagnosed AS. HLAB27+. Naproxen, indomethacin, meloxicam, and ibuprofen failed. On Humira (first anti-TNF) since July 2019 with no result so far.
Re: MS and neurological symptoms
Winston #283482 08/15/19 04:46 PM
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Originally Posted by Winston
You may find this recent paper helpful: https://www.ncbi.nlm.nih.gov/pubmed/30767720


Thanks Winston. Seems like the overall prognosis is good. Too bad that I don’t have access to the full text.

Re: MS and neurological symptoms
seymour #283483 08/15/19 05:44 PM
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The MRI went okay. Of course I was trying to analyze the technician’s vibe after it to get a sense of what she could have seen but all she said was "So MRI have no mystery for you now!" and that my doctor would get the results and sent me away.

Most neuro symptoms are gone now except for constant dizziness/lightheadedness. I sometimes get twitches and weak legs but my anxiety has been constant for two months, I barely eat two small meals a day and I’m obsessively thinking about my condition and that I’ll always be sick and dizzy.

Seems like the more my body and mind are burned out the worse it gets. I’m always sleepy and weak but I take Zoloft and Ativan so that’s that.

Re: MS and neurological symptoms
seymour #283495 08/18/19 08:53 PM
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That's great that your symptoms have been getting better! I really hope this was just a temporary blip that will not be a problem long term. I can see why you'd be anxious by the thought you were developing another serious condition in addition to AS. Whether or not you do actually have a different condition, the anxiety you are feeling in and of itself is can have real effects on how you're feeling physically and certainly makes things tougher mentally/emotionally. Do you have any support system? Some family members or close friends you feel comfortable sharing this anxiety with and working though it together, or even a therapist or counselor? I have obsessive thoughts and anxiety, especially around my medical issues, and have benefitted a lot from talking to a therapist.

On the other side of things, any news on your MRI results?


Diagnosed AS. HLAB27+. Naproxen, indomethacin, meloxicam, and ibuprofen failed. On Humira (first anti-TNF) since July 2019 with no result so far.
Re: MS and neurological symptoms
seymour #283500 08/19/19 05:24 PM
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I got a clean MRI result. No lesion of any kind in white or grey matter, nothing abnormal.

I’m completely baffled. I was sure I had MS. I’ve been living with this thought for months. I was convinced 100%.

I asked if it could be MS still but only in spinal cord and she sighed in disbelief that I was even asking that. She said to ask the neurologist if I see one but that it would already be very rare to have AS and MS together but to have a rare presentation of MS on top of that would be like getting struck by lightning.

So I’m happy but still wondering if I should stop Enbrel for a few weeks to see if my dizziness will improve. Maybe my body is sending warning signals and I should listen to it?

I do have hearing loss and tinnitus in my left ear so I can’t completely rule out vestibular problems.

I’m happy but at a loss as to what caused the neuro-type symptoms and dizziness. It’s like I don’t fully believe I don’t have MS.

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