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SoSt9
Regular Member


Date Joined May 2012
Total Posts : 277
   Posted 5/7/2013 9:33 AM (GMT -6)   
Things have been crazy. I did make a post in the epilepsy thread several days ago, but got no response. I was hoping that I would ave a better response here. I will add a little to what I am going to C&P as well

sost9 said...
...There are three incidences, actually. The first was months ago when I remember entering the bathroom, but at some point I found myself laying over he bathroom having lost control of my bladder. I could hardly stand back up, and I actually just laid on the floor. I was admitted to the hospital, but nothing was ever found. They had suspected something cardiac, but everything came back clean.

The next thing that happened was a couple weeks ago. I was watching a TV show before bed, and all of a sudden, it was the end of the show. I was confused, and when I found that I had lost control of my bowels (sorry so nasty), it freaked me out. My PCP had no clue what it was, but she thought that maybe it was a nerve thing. I called my Rhumy, and they said it was not their area. Finally, I called my Neurologist and she ran an EEG.

Just a few days before the EEG, I had something really strange happen. One of my kids woke me up from a nap, and her hair was blue. After about a minute, the color returned to normal, but later in the day (yet another nap), another kid woke me up, and she had the same blue hair. It seriously looked like they dyed their hair blue. I have *never* had anything like that happen before.

I just spoke to the Neuro today, and she said that the EEG was (slightly) abnormal. I think she said that three was activity in the front temporal lobe (I could be wrong) and there was unusual activity in the right hemisphere. I have no idea what is going on, and I am starting to get scared... seeing that the doctors don't seem to know what is wrong with me.


I usually get more of a response from the fibro forum, but this seems more lupus related. From the beginning (here, not by my doctors), it has been suggested that I may have a form of lupus that is neurological. Seeing that recently my Rhuemy is almost 100% sure that I have small fiber neuropathy, and I have these nasty migraines that are even frustrating my neuro (who is leaving in July - *sniff*), I am wondering. My official diagnosis by my Rhuemy is UCTD, but he has basically said he is waiting for it (Lupus?) to present itself.

I am really starting to get scared. I feel like but by bit, I am losing control of another aspect of my health, and it does not feel like any of my family or friends understand.
Frequent lurker... Part time poster.

Hypothyroid, Hypermobility, Depression, Anxiety, Autism (high functioning), Retinal Issues, Migraines, UCTD Skin Problems, and Gastric Bypass Surgery. Suspected: Lupus, Sjögren's and Fibromyalgia, POTS, Small Fiber Neuropathy, Epilepsy, Endolymphatic Hydrops, and whatever they decide next.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 5/7/2013 9:49 AM (GMT -6)   
Have you been checked for Vasculitis? It's an auto-immune disease, (usually a rheumy finds it, but not always), that includes migraines and other neurological head-related symptoms.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

SoSt9
Regular Member


Date Joined May 2012
Total Posts : 277
   Posted 5/7/2013 10:13 AM (GMT -6)   
Hmmm. That is not one that I had run across before. I had to look it up. I did not find much in similarities, but the way things go, I will mention it to my Rhumey the next time I see them.

Unless I found the wrong thing, it looked like it was more circulatory related than nerve. I seem to be having a lot of nerve issues. Plus, I have had Hypotension, not Hypertension.

These are the typical symptoms I found. Is this what you are referring to?
Somebody said...

General symptoms: Fever, weight loss
Skin: Palpable purpura, livedo reticularis
Muscles and joints: Myalgia or myositis, arthralgia or arthritis
Nervous system: Mononeuritis multiplex, headache, stroke, tinnitus, reduced visual acuity, acute visual loss
Heart and arteries: Myocardial infarction, hypertension, gangrene
Respiratory tract: Nose bleeds, bloody cough, lung infiltrates
GI tract: Abdominal pain, bloody stool, perforations
Kidneys: Glomerulonephritis


Of these, I have had: Fever (low grade), arthritis (but my orthopedic surgeon said nothing beyond what would be expected in someone my age), headache, tinnitus, reduced visual acuity (very mild and related to retina issues), Nose bleeds (ENT says from Sinusitis), and abdominal pain.

Like I said, I will bring anything up to my Rhumey (I see two, and although one is the "expert" in his field (and I like him), the other one is so much easier to understand).

I am actually going to see a different Neurologist who is familiar with the different autonomic conditions, so maybe she will have something to say about this as well.

Thanks for taking the time to answer me. :)
Frequent lurker... Part time poster.

Hypothyroid, Hypermobility, Depression, Anxiety, Autism (high functioning), Retinal Issues, Migraines, UCTD Skin Problems, and Gastric Bypass Surgery. Suspected: Lupus, Sjögren's and Fibromyalgia, POTS, Small Fiber Neuropathy, Epilepsy, Endolymphatic Hydrops, and whatever they decide next.

Post Edited (SoSt9) : 5/7/2013 10:23:06 AM (GMT-6)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/7/2013 3:04 PM (GMT -6)   
I wonder if it's CNS Lupus?
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 5/7/2013 6:48 PM (GMT -6)   
This is where I found a list of symptoms -- www.mayoclinic.com/health/vasculitis/DS00513/DSECTION=symptoms. I just mentioned it as I have a friend who's symptoms seem a lot like yours and it is her diagnosis.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

SoSt9
Regular Member


Date Joined May 2012
Total Posts : 277
   Posted 5/9/2013 10:26 PM (GMT -6)   
I was reading up on both the vascularity and the CVS lupus. They are related and scary. I will see what my docs think.
Frequent lurker... Part time poster.

Hypothyroid, Hypermobility, Depression, Anxiety, Autism (high functioning), Retinal Issues, Migraines, UCTD Skin Problems, and Gastric Bypass Surgery. Suspected: Lupus, Sjögren's and Fibromyalgia, POTS, Small Fiber Neuropathy, Epilepsy, Endolymphatic Hydrops, and whatever they decide next.
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