auto immune combos
AnonymousSeptember 19, 2009 at 11:37 am
hmm I dont know. my neuropathy had gone into remission and now I am sooo enflamed all over. I think they were right with lupus. my bones and muscles hurt so bad, and now I have developed the butterfly rash.
the weird thing is that I am remembering 5 years ago and the same thing happened i had neuropathy and it subsided and out came the rotten pain that feels like I am being poisoned or toxic.
my point is that the neuropathy and the enflamed muscle and joint pain do not exsist symotaniously. during my 5 year remission with the neuropathy I had many bouts of musculoskelital enflamation. and joint enflamation. does that mean that they have two different pathological identities? I just barely show ANA but I also had a possitive EMG and demyelination in my central nervous system 5 years ago.
If I get the lupus diagnosis should I still push for a nerve biopsy?
I am sticking with this site cuz I tried the lupus forums and they dont seem to be as well briefed on neuropathy as you guys. since neuropathy is my most pressing complaint and I did have gbs I think I belong here. I like you guys better.
AnonymousSeptember 19, 2009 at 4:41 pm
I am glad that the neuropathy is “on the sidelines” for a while. Presuming the diagnosis is correct, and from what you have been saying it is, you will experience neuropathic problems again.
I hope it does not come back for some time. BUT….. remember how you felt before the neuropathic problems resurfaced the second time. Try to remember those “leading indicators”. The clue to better and faster recovery, is to get treatment sooner the next time. The faster you get an intervention, the shorter the relapse will be.
On the other hand, if you ignore the symptoms, the relapse will happen, and you will suffer longer.
Write down what happened to you this time and try to remember a timeline. It will give you a point of reference for the next time. It can also help your neuro move faster for you.
September 19, 2009 at 10:41 pm
Not having a certain diagnosis is very difficult to deal with. I had very hard time not knowing what was wrong with me.
I have diabetes and Dr. Farrow told me immediately that it was not diabetic neuropathy.
My muscles were weak I was falling down a lot and I was in a lot of pain from some falling down injuries as well as from the CIDP.
Dr. Farrow ordered and nerve and a muscle biopsy as well as then sent it to Salt Lake City for a second diagnosis.
He speeded the biopsy up so I hope that when I heal my residuals will be non-existent or minimal.
I was very lucky to get a top-notch neurologist.
I have to be very careful with self- diagnosis on the internet, because I have gotten scared then realized that sometimes even Wikipedia is not that reliable. CIPusa is another site that I have questions about as well as others.
I have checked out Mayo clinic and other sites, but a lot of diseases including CIDP run different courses and present with indivdual symptoms and sensations for each afflicted patient.
The best is a good experienced doctor who order the appropriate tests and solves the problem. Sometime rare conditions eludes even the best specialits.
Please keep up your hope, Tara, and don’t give up on trying different doctors if necessary.
Wishing you the best.
AnonymousSeptember 19, 2009 at 11:09 pm
no these are the places doctors are taking me. in may I had MS again and then I had CIDP in june and july and in august and september I had finally lupus according to different doctors. I not only have learned the hard way not to diagnos myself on the internet but I have also learned to not believe the directions the doctors are taking me until they actually give me a diagnosis. my neurologist believes that my possitive ANA could be a red herring but unless I have cidp, fibromyalgia and arthritis, which is entirely possible. and maybe my swollen lyph nodes are from an unknown infection and so are the fevers. and maybe I just have a sunburn on my face. thats not sarcasm all this is a possibility. hmm I hope so
AnonymousSeptember 20, 2009 at 10:07 pm
Just be wary of overdoing and, my thought, is try to fnd a yong, hungry Neuroogist trying to”save the world?”
If they get around pre-conceptions (let’s face it the likewhat as worked in othr cases) and work WITH you, in stead of ON you, you’ll improve. EVERY oc I’ve conulted w tell me AIDP (GBS) and CIDP don’t hpen together (tho, some Post GBS symptoms are about the same) I ave an 8 year old, I don’t want her to see “Daddy Fall Out?”
But, take ope, if you are improving, yo are no getting worse? Soundssilly, but, a Day at Time (
PS- I’m told, CIDP hasa specific cope Pattern. Have you been, also, checked for Lyme Disease ? And Glan Function? Thyroid? (Most Neuros woul know o do this)
AnonymousSeptember 20, 2009 at 11:05 pm
I’m not sure that there might be any answers from it other than ‘damage’ is done? But maybe good neuro minds can determine WHAT that damage means.
It doesn’t take a ‘hungry’ new neuro to find things out? IT TAKES A CURIOUS one! One that doesn’t settle for the standard ‘dunno’s’ that we get. You’ve learned enough to have instinctual clues as to the kinds of questions to ask. AND don’t be shy about it! YOU know something’s wrong and you need to get better to either the source of the problem [most unlikely] or the best treatments for your symptoms, based on testing results….
Keep at it and keep asking those seemingly ‘stupid’ questions! There are heaps of them and most neuros, well?, they don’t answer them. But..the honesty of a doc in saying ‘I don’t know’ can be invaluable. The give and take of communication can go from there. AND communication is a key element to working w/your neuro and trying to get better and maybe ‘beat it’ to any degree?
Keep faith that it might/can/should get better and go from there, find out all that you can DO/BE to keep functioning as a mobile, sane human being. It’s not easy, at least, the last part? But any and every bits help!
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