Does anyone in lupus group have Hashimoto's Encephalopathy? Help please

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perfect54
New Member


Date Joined Sep 2011
Total Posts : 12
   Posted 12/1/2011 5:20 PM (GMT -6)   
Hi, I need help here please, nobody has been able to answer me. I have been just recently dx with Hashimoto's encephalopathy. Also have UCTD with features of lupus and scleroderma, have Hashimotos disease, microscopic colitis, Raynauds, Photosensitve, Myositis, myopathy, neuropathy, high blood pressure, allergies, just to name a few, lol. But now this. I looked it up and feel very fortunate that I have a neurolgist that was on top of things and dx this for me. But still scares the hell out of me, being so rare is weird, I though being dx with scleroderma was rare, yikes lol. But would love it if someone knows someone who has this, that I can talk to the forum groups have been such a great help for me through all the rest of this mess I am in. 
Thank you in advance.
Bobthe builder54 

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/1/2011 7:38 PM (GMT -6)   
Boy, you've got a mess don't you? :)
(((((((((((((((((((((((((hugs)))))))))))))))))))))))))
I thought I had issues.
I've got Hashimoto's, lupus, Raynauds, photosensitive, allergies, asthma, and glaucoma.

It sounds like you've got a good doctor looking out for you. I hope you can find answers soon.
Joy

perfect54
New Member


Date Joined Sep 2011
Total Posts : 12
   Posted 12/1/2011 8:20 PM (GMT -6)   
Joy, oh thank you for answering my post. I certainly do appreciate it.

Let me ask you this if I may? Is your Hoshimoto's also the encephalopathy kind? I have have been hypothyrod for a long time, and figured it was hoshimotos because of all of the autioammune stuff but not this, YIKES.
You sure have yourself a load full of trouble too. LOL> They kept telling me I had asthma also, but when i started to see my pulmologist he said no.
So who knows right? Why is it if you get one dang autioammune you get more, we should all go see Dr. House. LOL.

Thank you again for your reply,
perfect, or bob thebuilder what ever lol I sign boy ways.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/2/2011 6:46 PM (GMT -6)   
No, mine is the the basic kind. Autoimmune problems are frustrating and you never know what's going to happen.
Joy

perfect54
New Member


Date Joined Sep 2011
Total Posts : 12
   Posted 12/2/2011 6:51 PM (GMT -6)   
Joy, you are so right they are all frustrating and if people do not have anything like that going on in their health world they just dont get it because usually we do not look sick.
Susie

PJ555
Regular Member


Date Joined Sep 2011
Total Posts : 79
   Posted 12/2/2011 8:18 PM (GMT -6)   
Miss Perfect it is funny you said that,"usually we do not look sick!" I have been ill for a while because of what was supposed to be a minor gallbladder removal changed into a near fatal problem I have always had auto immune issues When I had my thyroid removed it weighed a little over a pound it was stuck to my vocal cords, shover over into my ear canals. They oculdn't even assure me I would ever speak again as they were paralized after the surg but they were ok. Now I have been symptomic for years, tested positive with lupus with my gyno but it was never persued. The symptoms just kept on coming stronger and causing more damage. Oh yeah I am going bald...wish I was kidding but I am just not. It was brought what has been laying in the backgroud right up into a flare,,,,this is no one shot....fizzle fall to the ground fire ball. I have been told auto imm diseases travel in pairs... Good Luck sweetie, Doctors are all about their ego and they money they can make
Peggy
Lupus Hashimotos Thyroiditis (Thyroid removed 1984) Gastric Bypass 2002
Synthroid 250mcg, Topomax 100mg, Lamectal 300mg, Vit D 50,000 mon/thurs, B12 1ml inj once a week, Plaquenil 200mg 1daily then 2 daily alternating, Prednisone (for flares) Valium PRN, Lasix 40mg 2x daily, Potassium,Percocet 10/325PRN, Imitrex inj or nasal PRN, Phenergan, Vyvanse 40mg, Multi Vit

perfect54
New Member


Date Joined Sep 2011
Total Posts : 12
   Posted 12/2/2011 11:25 PM (GMT -6)   
Peggy,
thankyou so much for responding to my post. It sure sounds as if you have had your fair share of problems, Wow. I am so sorry to hear.

Yes you are so right when you say doctors have egos that is a understatement. I have a few very excellent specialists who are disagreeing on a few things, not the new dx but some old ones. I have decided I am going to go with my gut. If I trust a doctor, then that is it. I am so tired of being poked, tested, questioned, etc, and when you go to a new one they do all there own tests because they do not trust another doctors tests or inturpations.

Are you loosing your hair because of the plaqunel? or from the lupus its self? There were two to three years I lost all my hair from my arms, legs, underarms, I was not on any meds at this time. It seemed when I started on plaqunel the hair started to come back, so I do not know if it is just the timming or was it the meds. I have noticed that the hair on the back of my head is breaking off, I do not know why, but I can see it, so I do not know if it is something comming on, I am under extreme stress (seems to be my middle name) lol, and now with this new dx it just adds more stress, Ikeep saying the doctors are going to convince me yet that I am sick, lol.
Perfect54 just so you know sometimes i sign by accident bobthe builder or susie, all the same lol

NADIA2
New Member


Date Joined Jan 2012
Total Posts : 3
   Posted 1/20/2012 2:02 PM (GMT -6)   
FOR: perfect54
I WAS DIAGNOSED WITH HE/SREAT (AND THERE IS A NEW NAME) about 3 1/2 YEARS AGO. HAD A FEW BLIMPS ALONG THE WAY BUT IT HASN'T BEEN TOO BAD. HAD A SIEZURE, SO I'VE BEEN ON PREDNISONE AND DILANTIN AND NOW GENERIC SYNTHROID. RECENTLY HAD ANOTHER SIEZURE /WAS CHANGING MEDS. I THINK I HAD A RELAPSE OF THE HE. WAS ONLY TAKING 05MGS.PREDNISONE PER DAY. NOW I AM UP TO 15MG PER DAY. MY NEUROLOGIST THINKS I SHOULD BE OFF ALL MEDS BY NOW????? WAS ABLE TO WORK FOR THE PAST 3 1/2 YEARS.
MY ENDO. RETIRED. THE NEW ENDO. ASKED ME WHY I WAS TAKING PRENISONE!!!!! I GUESS HE COULDN'T BE BOTHERED TO LOOK AT MY CHART BEFORE HE SAW ME. I'M NOT EXPECTING TOO MUCH HELP FROM HIM. SUPPOSE I SHOULD FINE SOMEONE NEW BUT NO ONE KNOWS WHAT THIS IS OR HAS TREATED A PATIENT.
I HAVE A LOT OF APATHY.......IS THIS A SYMPTOM?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/20/2012 6:29 PM (GMT -6)   
I'm sorry, Nadia, I'm having a hard time reading all capitals. Vision issues are common with our condition. Can you please retype this in lowercase?
Also in internet ediquett writing in all capital letters is considered yelling.
Joy

perfect54
New Member


Date Joined Sep 2011
Total Posts : 12
   Posted 1/20/2012 7:48 PM (GMT -6)   
Nadia2,
I just wrote a whole reply and lost it, I hate that when that happens, lol. Well lets start again. I am so glad that you are doing ok now with the HE. This dx scares me. I thought it was bad with the others but this one sucks. What were your symptoms besides the strokes? Mine where and are, balance issues, I walk sideways, tip when I stop walk into things, speech problems, cant find the right words, or concentration, memory, muscle weakness (although I do have mysotis also) light sensetivity, pains in my head, bla, bla, bla. lol. I also have trouble with my bladder, and bowel. which could be atriputed to other medical issues I have. The problem is I have so much going on the symptoms cross over each other.
Thank you for posting,
susie
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