CIU and MS

[Northerngal]

Hello MSWorld,
This is Day 1 for me. It was a bit of a challenge getting on this page using my smart phone. Finally did it!!
A little about me: I was diagnosed with MS almost 4 years ago and CIU last year. My health is overall pretty good. Last year I had bicycled my farthest ever, over 900 kms.
Just curious, does anyone else deal with CIU (Chronic Idiopathic Urticaria)?
I am on copaxne and doing well on it. I'll admit, I don't like the bumps and bruises from bad injections. Sometimes I wonder if some of my reactions are as a result of the CIU. The doctor doesn't think so.
Thank you so much for your feedback.

[JerryD]

Hello and welcome to the boards. I am sure that your post is the first time that I have read about CIU. I am sure that you will find the information, here, pretty good. Come back often. Good luck

[22cyclist]

Hi northern gal, from a southern gal. CIU as you know is a very irritating condition. MS can come with the same sort of itching and it falls under parasthesias. Since you have most likely been tested for the IgE receptor and FceR1, then CIU is probably the right diagnosis for you.

Some anti-seizure drugs can be used to treat itching that comes from regular MS itching, so talk with them about those and see if they help you at all.

Hope things get better soon! If not keep trying different things until you find something that does work.

Take care
Lisa

[truelove]

This is my first post and I wanted to talk about chlorenergic urtacaria (CU).(spelling may be incorrect) I started with this condition at age 18. I took me years to find out what it was.

I finally found an allergist that dx'ed me with CU At the time i was Not dx'ed with ms. That came 20 years later at the at the age of 37 (the ms dx) I had no idea there was a connection, I still have both and am 67 now, I was very suprised to see your post, and am so interested Wishing you the best. Linda

[Northerngal]

Thank you so much for your response Linda.
I am on antihistamines all the time now. The only test the doctor tried was a scratch test on my back. He had trouble finding a spot because I was so flared up at the time.
I finally have started my Vitamin D (kept forgetting to buy it). The CIU is more prominent since I started. I'm going to try a different brand, to see if it is a filler that causes more of a breakout.
I can't imagine having it for so long without a diagnosis. Do you suffer from face swelling with it also?
Lisa - that is interesting about the anti-seizure drugs. What side effects may I be looking at?
I didn't have the receptor tests. The MS clinic nurse wonders if I get it from the Copaxone. She has never heard of CIU.
I received a large bruise 2x on my right arm and now have a permanent scar. I wonder if I injected into a CIU wheel (sp?) that caused the blood vessel to break giving me a bruise. Any thoughts? The doctor I am seeing about the CIU nor do the Copaxone support team doesn't think so.
Hugs

This is my first post and I wanted to talk about chlorenergic urtacaria (CU).(spelling may be incorrect) I started with this condition at age 18. I took me years to find out what it was.

I finally found an allergist that dx'ed me with CU At the time i was Not dx'ed with ms. That came 20 years later at the at the age of 37 (the ms dx) I had no idea there was a connection, I still have both and am 67 now, I was very suprised to see your post, and am so interested Wishing you the best. Linda

[Northerngal]

Correction to my last statement

Thanks for this. I hadn't realized that I did have the IgE receptor tested last year, and it was normal.

Hi northern gal, from a southern gal. CIU as you know is a very irritating condition. MS can come with the same sort of itching and it falls under parasthesias. Since you have most likely been tested for the IgE receptor and FceR1, then CIU is probably the right diagnosis for you.

Some anti-seizure drugs can be used to treat itching that comes from regular MS itching, so talk with them about those and see if they help you at all.

Hope things get better soon! If not keep trying different things until you find something that does work.

Take care
Lisa

[Perennialz]

Hello, ( and yes I have CIU too) lol
I was searching for some threads that are related to CIU, and I wanted to inform you you're not the only person who is dealing with it. I have been dealing with inflammation on both hands since 2013 which only Mometasone ointment calm the skin down with anti-histamines. (temporarily)

It has gone on/off since then up until I landed in the hospital this past Nov. treating optic neuritis, and getting tests done confirming MS. Steroids only calm my skin down. My hands still flare up, along with hives on both elbows, knees, and calves now, and it itches like mad.

I seen a dermatologist , and an allergist to help me with the hands back in 13' for what I thought I was reacting to something, but had no idea MS was in the background waiting to turn it's ugly head at me in2014.

I was hoping back then it was only a winter damage thing, but my hands seem to flare up more in humid temperatures.

[Northerngal]

Hello Perennialz. Isn't it nice when we finally know what is driving us crazy. I find heat, tiredness and having my skin rubbed by another substance will flare me up. You should see my legs on a hot sunny day!!! Maybe humidity does too, because hot baths make me so itchy, but they feel nice on the sore muscles!
I am on Hydroxyzine 25 mg daily for the itch. It is the one antihistamine that is covered by my drug plan. On the bad days, I take up to three tablets three times in a day. I'll look into seeing if I can get Mometasone. It is amazing how those little weals can itch!!! I find the drug takes away about 80-90% of the inflammation away.
I have seen the antihistamine diet. I just love my hard cheese, tomatoes, citrus drinks (which help with my chronically dry sore throat), bread and pop too much to bother with it.
I am so glad for this forum. I am getting more information than talking to those around me.

Actually one paediatrician told me that he attended a doctor's seminar where they talked about CIU. He said that since there are so many factors that can cause flare-ups that it is almost impossible to pinpoint the one culprit. I read somewhere that autoimmune disorders, like MS, don't like to be alone and so a person ends up having more than one condition.

One thing the doctor, that diagnosed me, told me Perennialz (you may or may not have been told this) is to keep your skin from getting dry (not an easy task always in the cold and heat or if one has to wash often in their job).

Thank you so much Perennialz for responding to my post. I wish you wisdom in finding a solution to the extreme itch. If you do run across any other information, I would love to hear it!!

Hello, ( and yes I have CIU too) lol
I was searching for some threads that are related to CIU, and I wanted to inform you you're not the only person who is dealing with it. I have been dealing with inflammation on both hands since 2013 which only Mometasone ointment calm the skin down with anti-histamines. (temporarily)

It has gone on/off since then up until I landed in the hospital this past Nov. treating optic neuritis, and getting tests done confirming MS. Steroids only calm my skin down. My hands still flare up, along with hives on both elbows, knees, and calves now, and it itches like mad.

I seen a dermatologist , and an allergist to help me with the hands back in 13' for what I thought I was reacting to something, but had no idea MS was in the background waiting to turn it's ugly head at me in2014.

I was hoping back then it was only a winter damage thing, but my hands seem to flare up more in humid temperatures.

[Nicoly3467]

Hi Northern Gal-

Has your doctor ever talked to you about a gluten sensitivity linked maybe to the CIU?
I am definitely not saying this is the cause of the itching but maybe a reduction in gluten could help!

I have MS and my Neuro doc suggested for me to reduce/refrain from gluten as much as I can. She was thinking for the inflammation part of it in the body. So, I decided to do it and after a few weeks the itching on my arms and hands reduced greatly. There might be some connection between the two conditions.

Not sure if this will help you but it's worth a try. There are a lot of gluten-free breads/grains out there-(breads, crackers, tortillas, pasta, etc.). If you cannot find them in the stores near you, online is another option. If you decide to try this, give it alteast 1-2 months to see the full benefit.

100 percent whole wheat products have much less gluten than white flour products.

Hope this helps! I am not a big "anti-gluten" warrior but I do see some great benefits!

[Northerngal]

Hi Nicoly,
No I haven't tried gluten free. It is getting past the mental aspect of trying also the emotional aspect of having to deny foods that I enjoy or would insult the person who doesn't understand why. I admire those that do try. For me the antihistamine works for the most part at the moment. If circumstances were to change, I may go down that route.
Thanks for the thought Nicoly.

Hi Northern Gal-

Has your doctor ever talked to you about a gluten sensitivity linked maybe to the CIU?
I am definitely not saying this is the cause of the itching but maybe a reduction in gluten could help!

I have MS and my Neuro doc suggested for me to reduce/refrain from gluten as much as I can. She was thinking for the inflammation part of it in the body. So, I decided to do it and after a few weeks the itching on my arms and hands reduced greatly. There might be some connection between the two conditions.

Not sure if this will help you but it's worth a try. There are a lot of gluten-free breads/grains out there-(breads, crackers, tortillas, pasta, etc.). If you cannot find them in the stores near you, online is another option. If you decide to try this, give it alteast 1-2 months to see the full benefit.

100 percent whole wheat products have much less gluten than white flour products.

Hope this helps! I am not a big "anti-gluten" warrior but I do see some great benefits!

[Perennialz]

I thought I was the only one who loved soaking in hot water to not only relieve cramping pains, but also muscle pains as well. After a long day, I can't resist the temptations of hot showers, and bathing. Luke-warm water is mighty cold, but I know it strips less oil off of me... yikes lol.

I recently renewed my Rx ointments to keep my skin near level. Sometimes I forget to take my daily hydroxine pills. I swear my memory is worse ever now than last year.

I also got a neat tip I got from my PcP a few yrs ago. I got a pair of spa gloves which I glob on petroleum jelly, or Cetaphil cream to aid irritated skin before bedtime, sometimes I even use this trick during the day when I watch tv. I hope this helps everyone here. I love this site! I would've joined sooner, but it took almost 2 months for my vision to clear up from optic neuritis. I'm glad to meet all you here.

[Northerngal]

Thanks for the tip Perennialz!! I'll try that. Thanks for the statement about your eyes. I also had trouble with my eyes, hence my diagnosis with MS. Hopefully you aren't getting the internal burning or bitter taste in your saliva or coughing for an extended period of time every time you eat.
The one crazy solution that I foind to cure my cough is to eat 1/8 - 1/4 tsp of sriracha hot sauce.

[Perennialz]

Thanks for the tip Perennialz!! I'll try that. Thanks for the statement about your eyes. I also had trouble with my eyes, hence my diagnosis with MS. Hopefully you aren't getting the internal burning or bitter taste in your saliva or coughing for an extended period of time every time you eat.
The one crazy solution that I foind to cure my cough is to eat 1/8 - 1/4 tsp of sriracha hot sauce.

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]

Hi Northern Gal-

Has your doctor ever talked to you about a gluten sensitivity linked maybe to the CIU?
I am definitely not saying this is the cause of the itching but maybe a reduction in gluten could help!

I have MS and my Neuro doc suggested for me to reduce/refrain from gluten as much as I can. She was thinking for the inflammation part of it in the body. So, I decided to do it and after a few weeks the itching on my arms and hands reduced greatly. There might be some connection between the two conditions.

Not sure if this will help you but it's worth a try. There are a lot of gluten-free breads/grains out there-(breads, crackers, tortillas, pasta, etc.). If you cannot find them in the stores near you, online is another option. If you decide to try this, give it alteast 1-2 months to see the full benefit.

100 percent whole wheat products have much less gluten than white flour products.

Hope this helps! I am not a big "anti-gluten" warrior but I do see some great benefits!

Hiya Nicoly.
Is gluten free like whole grain? I love whole grain pasta and wheat toast. I'm up for suggestions.

[MSW1963]

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.