Strange symptoms..anyone have suggestions??

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Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted Yesterday 12:28 PM (GMT -7)   
confused  Ok so monday night I had to make a trip to the ER because I had a really weird case of symptoms. Im already in a bad flare up with rashes, burning pain/tingling/aching..all that good lupie stuff. Anyhow, I was sitting at school trying to do some work and I was getting shakey and dizzy and then a little bit later the tingling started spreading up my neck and into my head/face/mouth. Then from the base of my neck up throughout it tightened, I could actually feel the tension when I touched my neck. It was so uncomfortable it become harder to swallow and everything around me was dreamlike. I also felt more of this on the right side of my face even though it affected everywhere. My memory of this is foggy so I pretty much lost track of time when all this happened so I cant say how long it lasted. I never blacked out or anything but was really spacey. I went to the ER and they tried to tell me it was an allergic reaction!!!? I did NOT have any swelling, I could breathe fine and I didn't get hives or anything. They gave me a shot of benadryl and 20mg of prednisone and sent me home. Yesterday I had another episode after having the rash etc for a while and it was very similar to the day before but not quite as intense. The only difference was I almost had some sort of taste in my mouth with the trouble swallowing this time and when I spaced out once during the episode it lasted a few seconds and then I came back to the dreamlike state and was like where am i? for a second. I talked to my neuro who doesn't seem to think this is a seizure(although I had 2 seizures in the past at 15 except they were convulsive)and said it sounds like part of the severe flare up and makes him question vasculitis as he has before with my patchy burning sensations. With all this said Im just trying to figure out if anyone else has had a similar episode and what it was or what happened as far as treatment etc with their lupus? I go for an EEG tomorrow and well go from there. The ER gave me 3 days worth of the 20mg prednisone and some benadryl(<-which I dont see the need to take). Please can someone help??? Thanks. *hugs* -Brittanee 
 
 
*Lupie Britt*
 
-SLE- 
Plaquenil- 200mgs x2 in the mornings; Naprosyn- 500mgs twice a day; Flonase Nasal Spray- twice daily; Dexamethasone Nasal Spray- 3 wk intervals; vitamin- once daily; Prilosec- 20mg twice daily; Neurontin- 600mg twice daily; Cymbalta-60mg daily; Dexamethasone suspension for ulcers;  excedrin migraine- as needed.


Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted Yesterday 12:29 PM (GMT -7)   
btw i am not on cymbalta yet...i got it filled today but haven't started taking it..my neuro thought it could've been the combo of neurontin and cymbalta but when he found out i hadn't started it knew the meds weren't the answer...

 
 
*Lupie Britt*
 
-SLE- 
Plaquenil- 200mgs x2 in the mornings; Naprosyn- 500mgs twice a day; Flonase Nasal Spray- twice daily; Dexamethasone Nasal Spray- 3 wk intervals; vitamin- once daily; Prilosec- 20mg twice daily; Neurontin- 600mg twice daily; Cymbalta-60mg daily; Dexamethasone suspension for ulcers;  excedrin migraine- as needed.


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted Yesterday 1:03 PM (GMT -7)   
I would think mild seizure or stroke of some kind -- but if the neuro says not then the rheumy better be able to explain it. Or I might find a new neuro.

Sorry that's happening to you, it sounds quite frightening
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 12/13/2009 7:29 AM (GMT -7)   
he said he didnt think seizure but i got an eeg done anyway and am waiting for the results. he did say he knows its from the lupus and it brings him up to question vasculitis yet again as he did with my patchy burning pain,etc. He did not mentions troke at all but i looked up "mini stroke" or tia last night & thats exactly what it sounds like. i am def getting on top of this tomorrow with my drs!
 
 
*Lupie Britt*
 
-SLE- 
Plaquenil- 200mgs x2 in the mornings; Naprosyn- 500mgs twice a day; Flonase Nasal Spray- twice daily; Dexamethasone Nasal Spray- 3 wk intervals; vitamin- once daily; Prilosec- 20mg twice daily; Neurontin- 600mg twice daily; Cymbalta-60mg daily; Dexamethasone suspension for ulcers;  excedrin migraine- as needed.


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1551
   Posted 12/13/2009 7:57 AM (GMT -7)   

Hi Britt. I'm glad you went to the ER since the sensations were more on one side than the other.  I often consider myself the queen of wierd symptoms, especially neuro issues. During some flares I too get tingling, loss of sensation, difficulty swallowing, and fog so thick I can't do jack. When I speak it's like a skipping record and I stutter. This year I had a really bad flare. I never liked my neuro, so I went to a new one at Emory University Hospital. He ordered every test (neuro/psych exam, EEG, 3 MRIs for stroke, vasculitis, etc) and everything came back normal.  All those symptoms were caused by my flare. Lupus is such a trip isn't it? Regardless, I'm glad you went to the ER. Loss of sensation on one side is nothing to mess with. I hope all your tests are normal too. A hot bath with epsom salts might help with the tension- if your kids will let you smile  Love, Butterflake


Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease  Rx: Cellcept, plaquenil, prednisone, celebrex, prozac, wellbutrin, klonopin, neurontin, ambien, lisionpril, actos, nexeum, simvastin, lomotil, cholestryramine, claritin, nasonex,  PRN: tylenol arthritis, flexeril, phenegren, vitamins, Acupuncture.  Donna 


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 12/13/2009 10:56 AM (GMT -7)   
This sounds very similar to some of the experiences I had when I had cerebritis. All though, it could be so many different things. It's so frustrating to me that often a trip to the ER, though warranted and necessary, is usually a waste of time for people with Lupus; in my experience! I pray they get to the bottom of the issue soon! God bless you, Judy

coffeelover
Regular Member


Date Joined Feb 2006
Total Posts : 186
   Posted 12/17/2009 7:56 AM (GMT -7)   
cry  I have a similar reaction when I am exposed to light (especially flourescents).  It could also be associated with migraines...  been having alot of those lately too, not always "painful" but weird symptoms.  I didn't know until yesterday (and have had a Neuro for years) that migraines have a ton of symptoms that mimic other problems.  Good luck. 
"There is a little naughty monkey in all of us!"
 
Mononucleosis / Chronic Fatigue Syndrome 1991, Depression,Endometriosis 1994,Costochondritis,Stage Two Dysplasia 1994,Asthma 1995,Tonsilitus 1999,Lupus Jan 2004,Migraines, Interstitial Cystitis  2005, GI Bleed/problems 2007.
 
Rx:Hydroxycloroquine (Plaquenil) 200mg 2x/day,Hydroxyzine HCL (Antihistamine) 25mg 1-2 pills at night,Albuterol Inhaler  taken as needed, Acidophilus tablets 1billion CFU, Cabergoline 1x/wk, Valtrex 1gm/daily, Vit D 2,000 IU daily, Calcium/magnesium supplement, Senna-Lax laxative daily.
 
 
 


edabitit
New Member


Date Joined Oct 2008
Total Posts : 10
   Posted 12/22/2009 8:16 PM (GMT -7)   
You need to discuss whether vasculitis is an issue.

momofltlbrat
Regular Member


Date Joined Apr 2007
Total Posts : 164
   Posted 12/22/2009 8:31 PM (GMT -7)   
Britt
Also sounds similar to something I had many years back that sent me to the ER. They never officially knew what it was, but thought it may have been an esophageal spasm. I just thought I would throw out one more possibility to pass by your doctors. It was scary when it happened to me, so I pray you find answers, and/or don't have to go through it again.

Debbie
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