Hi Kelly! I was actually in a forum many years ago but that forum closed down. I have quite a few friends to that have Lupus and we email and stay in touch! I actually joined one forum last year that was huge and I just could not keep up with them in there. The forum was just to big to handle!
I have only met two others that were just like me and one is in Australia and the other one was from France.
I agree with the IVIG’s and really do think I need to be on them but arguing with these doctors where I live it’s like they don’t want to listen and want to try the Chemo out first. I too think it’s an Insurance protocol that they have to go by in order to be approved.
This state I live in you just about have to be on your death bed on order to get anything done around here! I don’t know if it’s because they are short of staff or just don’t have enough experienced doctors.
Me and my husband both agree that I will try the Chemo and if that does not work in 6 weeks and I see no improvements then we are going to see about getting me referred to John Hopkins which has a great Specialty for Lupus patients. It’s a long ride though but I may have no other choice. If I were back in PA I’m pretty sure I would have already been placed on IVIG’s.
Sometimes I feel like these doctors around here are trying to get some money out of you first before they do treatment. Well lets make 10 grand off her first then give her treatment! LOL!
He has only seen me two times so far and I think he wants to see how bad off I am in the next few visits before he decides the IVIG! After reading about the Hydroxycloriquine drug I decided not to take it this morning! LOL! Now I’m scared to take it!
I hope you all don’t mind me staying in here! I feel like I have a family here! Where the other forums I just don’t feel like I fit in! I’m uneasy and just feel weird posting! Thanks for the help though. I do agree with you and think I need the IVIG’s too! I printed that out too to show him on my next visit! Then will be anxious to hear what he then says! Hugs
Hi Kelly! It’s not really anxiety attacks that I have. When the Lupus acts up it makes my nervous system hyperactive. Parkinsons type of shakes and then too I start to get panicky because I can’t get relief! The Lexapro he gave me just for when I get these side effects. It has a mild sedative effect to it and he only wants me taking it for when I need it. Not for nerve per to say but to calm me down when the Lupus flares. I was on Zanax and forgot to add that one in. I take that only as needed too but it is a very mild dosage of .25. Really trying to not take the Zanax and they switched me to Clonazapam. Which to me is just as good. Actually like that better and it’s not as addicting.
Makes me feel like I am a drug addict though taking all these pills. But I can’t help it! I have met a few others like me taking more than I take! LOL! I hope I don’t get that far! I am praying the US also does something with Health Care Reform and actually does something decent. People that are chronically ill shouldn’t have to be paying out what they are paying. My husband and I both every single month just for me alone fork out over $500.00 a month in bills. Sometimes more! And that’s after my insurance has paid! I do the mail order pharmacy now so I can save a few dollars on RX’s! It’s certainly not cheap being sick and for those without healthcare with my disease. I certainly feel sorry for them.
Well I am getting offline! Going to watch some TV and relax for the night. Wishing everybody a good night! Hugs
Hi Kelly! Wished I could answer your question but think someone already covered it. Funny you mentioning a spider. On my way this morning to go pick up meds I had to wait because they had to order it from another store. Said it would be an hour wait. So I go to Lowes and saw this beautiful plant and ended up buying quite a few plants. Got home and as I was typing this spider fell out of my hair! LOL! Well it is now splattered spider but made me react to it! I guess I am not the only one that saw the spider too! Hugs
Hi Kelly! So sorry to hear about Emily going into a relaspe! Bless her little heart! Tonight I will be thinking about her and saying really strong extra prayers for her. Please keep us posted on her outcome! She indeed has me praying and I won’t stop praying for her until I see her well again! Hugs
It might pay to get a CT Scan of her pancreas and it’s possible she is suffering from Irritable Bowel. That stuff is painful as you know what. I have Diverticulitis and pain is around that area and my mom has Pancreatitis. Both didorders can cause extreme pain and came come and go just like irritable bowel. Someone with IBS starting out can get inflammtion of the Diverticula and that can cause irritation to the bowel and leading to terrible pain. Funny you mentioned this about seasonal! In the summer, I am bad and the pain seems worse. Heat for some reason aggitates it! I would reccomend her getting checked. Pancreatitis is something that even children can get and not trying to scare you but in children with that is call kill! Another thing that could cause pain around her belly button area is her possibly passing a kidney stone! Now that hurts! It might pay to get her checked out. Diverticulitis at times can put a person in the hospital requiring treatment. Sometimes surgery! In children is can cause many problems. Bleeding around the area causing blood loss and also causing anemia!
The only reason they found me having Diverticulitis was me having IBS at first. This past summer, I got the IBS syndrome and got really bad pain. When I went to get off the toilet there was a huge massive puddle of blood. Ohh that scared me to death. We went to the ER and they did a CT Scan and saw Diverticulitis. The bleeding was coming from that. They had to treat me for a while and I still have spells now from that area. Eventually that area will stay sore alot because it’s showing inflammation at the time. I can tell when mine starts getting inflammed for I start getting sore feeling in that area and then call my doctor up letting him know it’s inflammed again. Too much IBS can cause other problems down the road. It would pay to get her checked. It is something abnormal going on and may need treatment.
Ohh! An appendix too can cause this also. Attacks on the appendix but comes and goes until it eventually becomes ready for removal making that person get real sick then!
Hi Kelly! Looks like both are in the same shoes! 😀 We will have to keep each other posted on our outcomes here. Same thing for me. My neuro does not deal with CIDP and is still seeing me but has referred me to another Neurologist at Duke. Duke is going slow on scheduling an appointment. Still waiting to hear from them. Good luck Kelly! Hope they find out what is going on soon!
Hi Kelly! That is wonderful news about your daughter and I pray she continues to get well again and pray she never see’s CIDP ever again! I know this news was something you have prayed for and it looks like the prayers have been answered.
I hope that she never relaspes ever again and pulls through all this. Hard seeing a child sick and even harder being the parent having to watch them suffer. I know this has not been easy! I wish you my best!
i don’t know if this helps but– when i do more than average– walking, shopping, etc– and feel that i have fatigued my legs/body– later in the day, usually once resting/reclining, i experience pain as you described in emily… like electrical zingers that are quite disconcerting, if not painful. my guess is a 6 yr old’s vocabulary would use the word “hurt,” while i would say– disturbing, disconcerting, etc. it must be scary for her…
it scares me too.
i also get relief from pulling my knees to my mid-section, breathing through it and trying to relax. i for one can’t be stroked during such a moment, to prickly– but the comfort aspect for emily may out weigh and prickliness…
i don’t know if any of what i am saying makes good sense– just wanted you to know i have experienced it. also, my neurologist told me that some of that– zingers, itching, etc– may be healing. which kind of makes sense when you consider how wound itch and pinch as they heal.
hope you and emily are well–