View Full Version : Desley update!
04-12-2012, 12:47 AM
Well plaquenil is working very well, relieving half of the pain and reducing dramatically the stiffness. I have been left with irregular heart beat and racing heart. Twitching feet and now left hand. Headache! Light sensitivity that makes me feel like superman who has just been hit with kryptonite!
I have now had some. Tests re excessive Adrenaline of 336 which the max is 125. So almost three times the max. I note the lab has sent it to a special hospital for a further test of catecholamines and they also note very high level of dopamine in blood... The neuro has put me on dopamine about three years ago!
From what I read about the adrelanine reading and the further test mean is that I could have a tumor which could be responsible for fatigue, irregular heart beat, fast heart beat, headache, and other. I am not sure but I am a little happy about this as it appears that they take out the tumor and it all stops. I at least hope so.
I also get funny bruses, with purple back colour and red spots, without injury.
Does any one else have the same issues?
04-12-2012, 03:25 AM
good to hear you are having progress.
confusing,,,, but progress still.
04-12-2012, 06:03 AM
Yes thanks Steve
I am really feeling much better. Thanks Steve. Just frustrated as we all are wanting to feel normal again but in reality that won't happen!
04-12-2012, 07:12 AM
I get the purple bruises, especially on my elbows from no prior injury. I have always chalked it up to poor circulation, but should ask my Dr. about it. I just have never thought about it at the time I am in his office. I have no history of a tumor.
04-12-2012, 02:16 PM
It's good to hear from you again! I hope that they get that tumor thing figured out quickly!
04-14-2012, 07:53 PM
I am glad to hear that you are doing better and that the Plaquenil is helping. I know that bruising is not uncommon with Lupus, I'm not exactly sure why..but it does happen frequently an to many.
I hope that, if it is a tumor, that it is successfully removed and that this does put an end to all of your issues.
I wish you the best of luck.
Peace and Blessings
06-09-2012, 07:44 PM
Yes it is a lump but diag as Mesenteric panniculitis see thread on this the drug they are using is pretty dangerous for me so I am having bloods every two weeks and will be on it for 3to six mths. I am feeling les pressure so earlie days and no side effects yet other than when I have a glass of wine I feel like I have had three so I am going to stay off the wine.
06-09-2012, 08:08 PM
We always read that all kinds of complications can come along with Lupus. Have your docs told you that this tumor could be related to your AI issues? I'm curious to know if it is, or if it's something unrelated.
I hope that the medicine takes care of it for you. It sounds like a scary one to take, but I'm sure that would be better than surgery.
Keep fighting and get better!
06-09-2012, 08:17 PM
It is an auto immune thing. I posted a paper to read under the thread in Lauris lounge under the title of c.... Treatment for mesinteric panniculitis. It has a good outcome so the risk of the drug as Prendisone is first choice as I can't take that they are using the other c..... It even explains all the diverticulitis events previously as it appears of the 130 cases reported they all had diverticulitis first. Thanks
07-29-2012, 01:03 AM
Well sitting hear after being on the new drug c.... For the past six weeks. Had to half it as I was getting toxic and now I have had extremely sore throat for over a months and now head and chest cold cough headache etc. etc. I go for my follow up abdo ct on Tuesday and see the surgeon on Thursday. I hope to get this over and fixed soon as Colin is going away to the uk in Sept. and I was going to Brisbane in October. Feeling miserable with the flu like symptoms. Teeth aching!
08-01-2012, 04:22 PM
I'm glad to hear from you again. Is the new drug an immunosuppressant? That might explain the other symptoms - you might be more suseptable (sp?) to infections because of it. I hope that you talked to the doc about it.
Let us know ho you're doing.
08-01-2012, 04:30 PM
The drug is Colchicine it is mainly used for gout but it is also used for mesenteric panniculitis. This also links with the fat necrosis. I see the surgeon today so will let you know what is going to happen. Thanks for your concern. Had the cold ? Since about 5 th July now getting better only left with flem at the back of throat.
08-10-2012, 12:19 AM
Well saw the surgeon for the second time after he got my file up re the two previous ops for hiatus hernia. Also saw the gastro. Well they would have to be an open up operation and they would have to go through the lungs........ It is definitely shrunk so the lumps are confirmed as mesenteric panniculitis which I have been told is an autoimmune condition from lupus. I am back on to the larger dose of colchasine. Stomach is working a little better as it doesn't always empty. So I have to wait four more mths to see if it goes completely and if I get pain I have to have the operation. But at the moment I have refused to have it as it is too risky with all the scar tissue in side so far.
08-10-2012, 06:07 AM
08-17-2012, 05:46 PM
I have been given a lot more info on mesenteric panniculitis. Well apparently there are only 400 people in the world with mesenteric panniculitis which is linked with lupus. It has flares and I have just managed another flare this week. It is really hard to manage food textures when the pain starts and while managing my stomach and bowl shut down.
Surgery is not the way to go and is often subsequent from stomach surgery and lupus. So before having any stomach surgery with lupus ask your doctor about the possibility of triggering off mesenteric panniculitis. It is massive scaring which can strangle the bowl and make a blockage which can be life threatening. Any more info needed just ask me.
Sorry about whT is going on with you. I did want to make a general statement after your post. ANY and ALL procedures should be talked about with your doctor/dentist before having them done. We must make sure that the docs know about the Lupus because it can change the course of treatment
08-17-2012, 11:44 PM
Normal procedures most Drs can take the precautions for Lupus but my warning is for this extremely rare condition of Lupus - mesenteric panniculitis, which when first identified by a abdo ct special consideration must be taken as most general surgeons will jump in to respect or take a biopsy of the lump and this causes further complications as the scaring from stomach procedures makes this condition even worse. In fact a biopsy taken with a ct like how they do a liver is the least invasive and should be considered. I have additional complications as the surgeons have already been in twice to fix hiatus hernias and the last was 8hrs because of all the scar tissue formed.
So the issue I am saying is yes be careful with surgery and Lupus and especially stomach ops take extra consideration on possible long term consequences. The scaring Lupus causes can develop into stringy and lumps at can strangle the bowl.
Just trying to emphasise take care with all surgery as I wasn't told of these possible complications and I wouldn't expect many surgeons would realise that this condition linked to Lupus existed.