So lost ...........

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

mystical2016
New Member


Date Joined Apr 2016
Total Posts : 8
   Posted 5/1/2016 1:12 AM (GMT -6)   
confused I feel so lost right now and like I have no one to talk to that understands............

I have been thinking about weight loss surgery for the past 3 yrs and have made my mind up that I was going to do that because I was sick of being over 350 pounds and sick of feeling like a failure as a mother and wife. I scheduled an appointment at a surgical weight loss clinic and met with that Dr on the 28th of March. I got started on a 6 month diet.
I was so excited to get started that on the 29th I restocked my kitchen and headed to my PCP to set up my first initial appointment and get my first weigh in. She said my b12 was low and wanted to start me back on injections (which is was low back in Oct 2015 when I seen her over having trouble breathing and was DX with double pneumonia) anywho I had no reaction to the b12 injections I took back in Oct.

So I got an injection on the 29th before I left her office but was unable to pick up my prescription til my husband got paid that Thursday so I started them Thursday and took one Friday. I felt sick to my stomach Wednesday and Thursday called my pharmacist and she said it was probably due to my level being so low and bringing it up fast and to take some kaopectate(sp?) which I did, somewhat felt better, brushed it off. Went in Friday for fasting blood work for my weight loss surgery stuff. Woke up in the middle of the night and my face swelling. Remind you later on that day its April 2nd Saturday and my eyes are swollen shut I feel like someone doused me in gasoline and threw a match. It only affected the skin around my eyes, my nose and all sides of my nose, my ears, back of the neck, one hand, one arm, elbow and my entire scalp. I went in that same day and was told that it was shingles. This was a different dr because mine wasnt in at the moment but I didnt care I just wanted to get seen. I get worried and want to see my own dr so I got back in April 5th which is a Tuesday. She said she believed it was shingles also and wanted me to see a ophthalmologist because it was so close to my eyes she gets me into one on April 7th which is a Thursday. The dr walks in and says wheres the shingles I said here on my face head and neck and he said thats not shingles thats lupus....you need to get tested. I rush home call my dr's office and tell them what he said and they told me to come in the next which is Friday April 8th 9:45am to have blood work done. I've never given so much blood before in my life 13 vials. I called daily not only because I'm worried but because I'm on no medication in desperate pain and just wanting help or some answers so I can get help. It was so bad a few times that I just didnt wanna live anymore. Anyways while calling daily I find out some of my lupus panel had come back and that wanted me to come in so on April 12th I went in and was told that both my DNA tests hadnt come back yet but that it looked like I had lupus and that I would need to see a specialist and he would discuss with me further about what needed done. Im confused ... Im lost that day I drive home thinking Im going to die and leave 4 small children all under the age of 9 behind with a dad who I know will fall apart if something like this happens. I get home and send my husband back to get the predisone(sp?) she prescribed 20mg 1pill 3x a day for 3 days, 1pill 2x a day for 3 days and 1pill 1x a day for 3 days. I hate to admit it but about day 3 or 4 I felt like a brand new person almost like they had made a mistake and that I wasnt sick anymore. That regimen lasted 9 days.... ended on the 20th .... needless to say I could feel beast waking up a few days prior to today so I didnt even make it 10 days because earlier today April 30th I went in and said I needed more meds .... I see a dermatologist on the 3rd which is this Tuesday and I see the rheumatologist on the 10th which is the next Tuesday.... Im on 10mg 1x a day.... since Im in the beginning of a flare.... I feel so defeated I dont understand why my body is turning on me my future seems so unclear now just with how I feel and the pain.... I was going to school to be a nurse and that dream seems so far and out of reach now :( I just wanted a better life for my children..........

Guess Im asking if you've had weight loss surgery send me a msg or write me on here or if youre working please let me know its possible to work and how youre doing it .... I just got my SRNA card and really wanted to use it but since I have the rashes on both hands now its extremely painful so I was going to wait til I seen the dermatologist and see if she could give me something else to use on it. Any information I would greatly appreciate or anyone that could read results lol because Im curious and cant figure out what Im looking at.... or maybe just to tell your story too so I dont feel so alone cry Sorry its so long just wanted to give some background see if anyone had went thru what Im going thru and have a buddy or something. Thanks!

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 5/1/2016 8:27 AM (GMT -6)   
Welcome, Mystical,

Regarding the weight loss surgery I have to say that I don't recommend it, especially if you do turn out to have Lupus or another auto-immune disease. We have had members with very poor results, it's just not a good idea to try on top of a systemic illness.

As for the rash, I'm *very* confused. A Lupus rash looks and feels nothing like shingles. Note that a rheumatologist is the Dr who is the expert to determine whether you have Lupus or not - PCP and optho would just be guessing. Similarly the dermo and the rheumy are best trained to diagnosis a Lupus rash, PCP and optho are just guessing.

Lupus is NOT diagnosed by blood test - a blood test is only one symptom, and you need to have 4 of a possible 11 for a clear diagnosis. (See link Diagnosing Lupus below.) Blood tests may indicate you need more investigation, that is what you are doing now. Don't panic, don't read too much about Lupus, just take care of yourself and stay calm until your appointments.

It's interesting that a rash developed so close to you taking the B12 medication - I almost think you have an allergic reaction of some kind to the medication. I found this with respect to B overdose: "Symptoms of allergic reactions include swelling of the face or tongue, hives and difficulty breathing..." It happens more often in people with impaired kidney function. I would try to make sure you are drinking enough water to help move the B12 thru your system - are you still taking B?

Best wishes, let us know how it goes.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/1/2016 5:45 PM (GMT -6)   
Hang in there and be patient about the process of diagnosis. Try not to over think things and project yourself into the future.
Worrying just makes you feel worse.
Try to focus on getting through moment by moment.

As for the surgery I'd wait to see what's happening now. Surgery is rough on us.
I'm overweight and have been slowly losing weight for over a year now. It's slow go but I'm patient. Diet changes really help me since exercise is too hard on my arthritis. 50 pounds gone!
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

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

mystical2016
New Member


Date Joined Apr 2016
Total Posts : 8
   Posted 5/1/2016 9:35 PM (GMT -6)   
No I'm no longer taking the b12 shots I was advised on April 2nd to stop the injections ( I only had 2 shots in my system before I had a reaction) .... I have a picture of the back of neck how the rash looked but I'm not sure how to insert a picture. Huge circle and raised,red and extremely painful weeped alot.
I was told that it couldnt be shingles because it affected both sides of my face? I had a positive ana and Im not sure if the other results would be accurate because I had been on antiviral meds for a week when I gave the blood for the lupus panel. I stopped the meds that day because everyone was screaming lupus which it didnt help my rashes they actually had gotten worse during the course of the meds. The only thing that helped and gave me relief was being placed on a taper dose predisone 20mg 3x a day - for 9 days. I ended the regiem on April 20th and started feeling bad the 25th and hit full force the 27th in denial waited til the 30th when I could no longer wait any longer and went back in and got more steroids 10mg 1x a day for the next 10 days to get me to my appt with the specialist but I duno why I feel a little better but still like crap :(

Thank you both for replying, just nice to hear from people who have dealt with this and apparently are ok makes me think my life isnt completely over - stayed up all night last night and just had myself a pitty party I need to quit researching because its driving me insane of all the possibilities it could be ... waiting is hard

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/1/2016 11:34 PM (GMT -6)   
Watch out for "Dr. Google" you'll scare yourself silly.
Remember this....what's put out there is worse case scenario.

I've had lupus since 2011 and all I suffer from is joint pains, occasionally swelling, and photosensitivity. Anything worse is treated with predisone and it eases off quickly.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

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

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 5/2/2016 10:22 AM (GMT -6)   
mystical2016 said...

So I got an injection on the 29th before I left her office but was unable to pick up my prescription til my husband got paid that Thursday so I started them Thursday and took one Friday.


Oh, I thought from the above that you are taking prescription Vitamin B?

mystical2016
New Member


Date Joined Apr 2016
Total Posts : 8
   Posted 5/4/2016 12:20 AM (GMT -6)   
My dr tested my b12 levels and it was 192 and she said that was extremely low and that it needed to be raised. She said how low it was that I needed to be on the the b12 injections you take one shot a day for a wk then 1 shot once a wk for a month and 1 shot a month for 3 months and then have your levels checked again to see if they've been raised or if you need to continue 1 shot a month for another 3 months. I did this back in Oct of last yr got my levels started in the 200's and I got them raised to the 900's but wasn't able to go back to the dr til the end of march and she said it was lower now than it was last yr :(
So yes it was prescribed just shots that you can take at home. I was told that OTC supplements wouldn't help me because my level was so low. Has that happened to anyone else? Could it be lupus related? I asked my dr but she seems very overwhelmed and keeps mentioning that she's never dealt with a possible lupus patient before. I only got two shots in before the rash started and they told me to stop taking the shots just in case it was what caused it but I'm getting rash again. Seen the dermatologist today and she said she doesn't treat lupus and isn't for sure if it is or not and for me to keep the appt with the specialist on the 10th she made copies of all my blood work but flat out told me she didn't know what any of it meant.... so basically I drove 3 hrs out of my back and forth for no reason to find nothing out and still be lost and confused :(

Post Edited (mystical2016) : 5/3/2016 11:24:31 PM (GMT-6)


Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 5/4/2016 8:16 AM (GMT -6)   
Oh, I see. Sorry, I thought the prescription was for pills -- I would never be able to give myself shots so it didn't even occur to me that you were doing that!

Sorry the dermo couldn't help. She should have been able to help identify the rash. There is a form of Lupus, Discoid Lupus, that is only on the skin I would have expected her to be able to tell you a little about that. But, no a dermo isn't the right Dr if it is Systemic Lupus.

Low B is common with Lupus, but certainly is NOT considered a symptom of Lupus, and most people get up to normal levels taking a prescription pill, and a lot manage to increase it enough with an over-the-counter pill.

Yikes! That dermo is far away! Is the rheumy you've been referred to also that far?
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

mystical2016
New Member


Date Joined Apr 2016
Total Posts : 8
   Posted 5/4/2016 8:47 AM (GMT -6)   
Yes the rheumy is that far away also. I live in a small town and where I travel too is a bigger city. Here you usually get sent there when they can't figure it out or you need more advance testing, crossing fingers that the rheumy will know whats going on and can help me.
Question if you don't care? When you first went to your rheumy did they re-do your blood work or use the blood work that your pcp performed? So nervous and just wondering what my first visit will look like....

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 5/4/2016 10:25 AM (GMT -6)   
Well, that was back in 2002, and I've had a long period of cognitive dysfunction between then and now -- so I honestly don't remember.

I think sometimes what the PCP ordered covers everything, but sometimes it doesn't - and if it doesn't they probably re-do everything so that the results are in proper context.

Read the first thread, Lupus 101 - I believe we have a list of things to have for your first appointment and what to expect. (Sorry, not able to double check that right now, will do later.)
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/4/2016 12:22 PM (GMT -6)   
My rheumatologist repeated my blood work and did additional blood work.

I have to drive an hour to my rheumatologist. I don't know if I could drive further than that, too much sun for me.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, September 26, 2018 4:28 AM (GMT -6)
There are a total of 3,006,716 posts in 329,384 threads.
View Active Threads


Who's Online
This forum has 161847 registered members. Please welcome our newest member, Mindstrange.
122 Guest(s), 3 Registered Member(s) are currently online.  Details
goshawk, Mustapha, Subdenis