Newly diagnosed and very confused

[Hciebma]

I was diagnosed by a neurologist earlier this week after several months of chronic urinary retention/lack of urgency, one-sided arm and leg weakness and facial tingling.

I have previously been diagnosed with psoriatic arthritis, idiopathic spontaneous urticaria and vestibular migraine.

I take regular medication to treat the above but I'm considering ceasing my medications (slowly to avoid withdrawal side-effects) so I can reassess the validity of what I experienced when being diagnosed with those illnesses. If I get hives again, then it's more likely it's genuinely a mast cell issue. If I get arthritis pain and psoriasis, then it's more likely a genuine autoimmune response. If these issues reoccur then I will consider commencing treatment again.

I'm also supposed to be getting urodynamics testing done in two weeks but now I feel it's a pointless waste of both time and money. I'm going to cancel it to free up a slot for someone who actually has something wrong with their bladder. My bladder retention is from fnd so there's no point in wasting resources looking for a problem that doesn't exist.

More than anything, I feel like I can't ever trust how my body feels or how my brain interprets what my body experiences.

[Lady4]

Hi and welcome

Please make sure any withdrawal plan is drawn up and regularly monitored by a medical professional. Sudden withdrawal of some medications can be dangerous.

Don't assume every symptom is to do with FND. What "rule in" diagnosis did they give you?

Personally, I would go ahead with the tests planned.

Just checking you haven't had any surgery lately.

Its best to address the biggest dehabilitating symptom first.

[NorCalFND]

hi Hciemba,

I was recently diagnosed last month after about a two-year search and am currently trying to get into an FND specialist here in the US. I think your last sentence, "I feel like I can't ever trust how my body feels or how my brain interprets what my body experiences" holds very true to me.

I find my body is almost always trying to be stressed out and I'm always trying to calm it down. For me, the more tired, stressed, or excited I am, the more I'm going to have worse symptoms. For quite some time I thought of the pains, twitches, and stumbles as just a precursor to something worse/degenerative. Now, knowing that it will not get drastically worse has really made a difference for me when I have issues.

As far as the urinary issues you mention, all of those autonomic (nausea, digestion, bladder control - etc) issues are the worst for me. I have a ton of trouble finding solutions that fully remove any problem. Unfortunately, I have found no magic pill and just better ways to manage.

FND feels like a mental marathon and anything to strengthen my mind to handle all of the bullshit that comes up constantly has been my biggest help. Meditation, breathing techniques and exercise no matter how bad I feel have been my biggest helpers. Also, to steal a Finding Nemo quote, "Just keep swimming!"

Sounds lame but I havent once regretted getting up off the floor and trying to have a better day. Can be tough but just make small steps to feel better and see where it takes you.

Just keep swimming and hope you have a great day!

Mike