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Old 09-03-2018, 10:26 PM #1
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Confused Hello!

I am not yet diagnosed with any neurological disorder...yet. I do have Sjogren's syndrome but I have been experiencing some scary symptoms in the past three months that are getting worse. I am looking for support, advice and feedback. I see my doctors soon for tests but in the meantime, just looking for support.

Three months ago, I would get out of the shower and have pins/needles and intense itching on my legs. I thought I was allergic to my laundry detergent. So, I got a hypoallergenic one. A month later, still kept on and getting slightly worse. On/off I would leave the shower and 2 min after I would be itching, muscles tensing. My body would ache after and exhaustion set in. I have a dermatologist that was treating me for rosacea and we came to the conclusion it was my antibiotic...possibly. Got off the antibiotic, started Zyrtec, another month goes by and it's getting worse. Went back to her and she says I am allergic to water. I am on an obscene amount of antihistamines. It's not just shower water but also rain. I follow up this week on Thursday.

I believe there is some neurological thing going on because it feels like a seizure and sometimes they are worse than others. I am concerned it might be the Welbutrin I started three months ago because this has never happened before. Then again, I really don't know. Today I tried showering and it was really bad. Almost instantly my body can't stop reacting and itching, burning tension in my legs and arms. It's like i am shaking on the inside and I have to wait it out.I felt weak and exhausted afterwards. These episodes make me emotional now because I haven't told a lot of people including family until I understand more about what I am going through. Some other symptoms have been my face going numb, sometimes my lower back near sacrum would hurt badly. I am hoping to see a neurologist after this appt with the dermatologist. All I can say right now is that I am scared. The symptoms here are only a portion of what I have experienced and I am hoping that maybe someone else understands or might have an idea of what I may be dealing with. Of course, my doctor can only say for certain but I need a little something to help me gain perspective. I can't focus or work well when these episodes happen.
I know with autoimmune disease like Sjogren's, you can develop other secondaries but this year my blood work seemed fine except my glucose was really low on a (non fasting) CBC. I will keep you updated when I learn more.

On a positive note, I am not one that likes to give up. I have a marathon I was going to run but due to exhaustion/fatigue, I hope to walk it at least. I am looking to keep up with my job working to help save animals <3 and creating art. I hope I can also lend advice and be of support to others here.
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Old 09-04-2018, 07:27 AM #2
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Hi Kat

Welcome to NeuroTalk .

I am sorry to read about your Sjogren's syndrome. What you have described might be peripheral neuropathy.

This is something which has been raised in the PN forum (https://www.neurotalk.org/forum20/) in the context of Sjogren's syndrome. It might be worth posting there and you can also use the Search command (https://www.neurotalk.org/search.php) to find threads where it has been discussed there.

All the best.
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"Thanks for this!" says:
Kat82 (09-04-2018)
Old 09-04-2018, 03:14 PM #3
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Default peripheral neuropathy

Do you have any outside resources that can give me more information about peripheral neuropathy?
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Old 09-04-2018, 04:51 PM #4
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Welcome Kat82

If you take a look on the PN forum, you will find a number of pinned "sticky" threads on top with useful resources.
https://www.neurotalk.org/forum20/

There is also a subforum there with a lot of extra information
https://www.neurotalk.org/forum119/

Members there are very helpful too
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Old 09-06-2018, 08:19 AM #5
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Default hi kat82!

hope i got your name right!

i am brand new here. but i looked at your post and just wanted to say that what you're experiencing certainly sounds scary and like alot to be dealing w. it must undoubtedly be very hard many days, but it's great that you're still working on things like walking that marathon- even if you get only partway through, that will be a real achievement just that you kept holding onto that goal and working towards it!

best wishes to you.
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