CIU and MS

[Northerngal]

Perennialz - Thanks for the heads up about the creams. I can often feel the rash before it pops out.
Fortunately I have no scar tissue on my eyes. From what you said, my eye problem was quite a bit different. I woke up with my eyes going in all directions making walking difficult and my eyes feel very weighted, making them hard to open. I notice now that if I am going to bang into things I quite often hit my right side or drop things from my right hand. Which makes sense since my right side was the one that had the internal burning sensation.
The one to two weeks I had the metallic taste I lost over 20 lbs. I couldn't eat
or drink anything. It all tasted horrible! Fortunately I could tolerate meal replacement drinks.
I also suffer from dry mouth and cough as a result. I had no idea that was caused by the antihistamines!!

Hopefully you are right and the colour red is coming back 😊

I hope it helps you as well Northerngal. My skin burns sometimes with tingling/itching, which leads me to scratch even more. Sometimes OTC ointments make the skin burn more since they're so badly dried out, I need to use the Rx ointments.
The internal burning, no but I do get the occasional metallic taste in my mouth. Coughing I get more when the air is dry, or even dry mouth caused from the anti-histamines. I try to go on a small hiatus with the anti-histamines when it gets too overwhelming, but allergy season is coming soon, so I'll state the course with hydroxine or benedryl.

I'll keep your tip in mind with the hot sauce , that will come in handy if I get those coughing spells. Thank you.

My eyes were so bad from optic neuritis , it took over 1 month to clear up, and another month to sharpen up even more. I've got a question for you too Northerngal, did the color red get really distorted in your vision too? Some red items I seen post ON looked darker and faded too. My left eye has scar tissue now too. I told my neurologist some reds I see look more normal, but I think might be lying to myself lol

[Perennialz]

Perennialz - Thanks for the heads up about the creams. I can often feel the rash before it pops out.
Fortunately I have no scar tissue on my eyes. From what you said, my eye problem was quite a bit different. I woke up with my eyes going in all directions making walking difficult and my eyes feel very weighted, making them hard to open. I notice now that if I am going to bang into things I quite often hit my right side or drop things from my right hand. Which makes sense since my right side was the one that had the internal burning sensation.
The one to two weeks I had the metallic taste I lost over 20 lbs. I couldn't eat
or drink anything. It all tasted horrible! Fortunately I could tolerate meal replacement drinks.
I also suffer from dry mouth and cough as a result. I had no idea that was caused by the antihistamines!!

Hopefully you are right and the colour red is coming back 😊

Yeah, when ON started I thought I was experiencing an optic migraine. The only difference was It didn't go away in <1 hour. The color red was distorted , and I also had some sharp pains, and also from what I can best describe is the occasional Pink Floyd laser show going on with my sight, only problem I wasn't able to turn it off lol

I also had both legs move uncontrollably around that time my eyes were slowly going bananas. I think ON of all the things I've gone though scared me straight to report any kind of symptom to my doctor. No more ignoring symptoms for me!

I bump into stuff too, 2 weeks ago, I bit my cheek and tongue so hard it hurt for over a few days. I think it's safe to say even when I'm careful, things like this are going to be more common.

[Northerngal]

Thank you for this info. It sounds like you had a rough go of it 😟

Northerngal, I have a decades ago dx of Catamenial Epilepsy, aka epilepsy associated with hormone fluctuations. CIU is a rare but established sx associated with CE.

My CE dx was based on abnormal EEGs and my gynecologist who was researching the pattern he recognized in his practice. He also confirmed the CIU associated with hormone fluctuations and Catamenial Epilepsy. According to my gyno, my ability to associate the cluster of sx and provide an accurate history of the sx cluster, made the dx pretty straight forward, pending confirmation of abnormal EEGs, I dx myself according to my doc. I can't tell you what a relief it was for me to get the news that I wasn't suffering the ever popular hysterical female syndrome.

My episodes of CIU always presented as a cluster of sx that included Optic Neuritis, eyes swollen closed w/untreatable body wide hives, chronic UTIs, cognitive dysfunction, that presented within 7-10 days of the start of my monthly cycle.

The chronic episodes lasted for approximately 5yrs., resolved with at most 2 episodes of ON a year for the next 10yrs. Then the onset of fulltime MS sx, fatigue and fulltime cognitive dysfunction, and too many to count brain lesions.

It wasn't until recently reading here at MSWorld that I realized there is a clinical name for my chronic hives.

I hope this helps you in some small way. My only advice is to encourage you to not minimize or discount what you know to be true about your body and your health.