NEED HELP figuring this out. Rewrote this and put it all together to make it easier

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Hi everyone, I have been living with Lupus for 10 years now, diagnosed for maybe 5 but this is not like any of the flares I usually get.  Its been going on for 1 month now and I haven't got any answers or help, I have no insurance which makes things very difficult, and I have to wait until january to see a reamatologist again.  I don't know if this is my lupus my fibromyalgia or something completly different.  It all started the day after my last family member here left to move to florida, after useing soy and whey protein isolates 4 tablespoons a day for a month and having a diet soda everyday for a couple weeks. I'm not sure if any of those have anything to do with this but they are things I remember as different before this happened.  My first symptom was a tightness completly surrounding my throat, somewhat like the feeling you get when you hold in tears and need to cry, it felt like the muscles were swollen or inflammed pushing my throat walls together til they would touch, and still is to this day one month later like I have two chins it is so swollen, they tested me for strep and thyroid and both were fine, my throat doesnt hurt its everything around it, then after about a week my symptoms increased to flushed, extreme shakiness, numbness, seeing sparkles and alittle light disturbances, chest and upper arms became darker red and extremly hot to the touch with dizzy spells, sneezing and more nasal congestion. No more sneezing now a month later just nasal congestion still. The back of my knee then seemed to swell, I'm getting muscle spasms from head to toe, with numbess, tingling and pin ***** sensations all over especially in my back and Mostly legs. Mostly legs now with pains in my chest and under arms. Alot of tingling in feet now. Also having green diareha which seems to be normal color now for the last couple days.  Peircing pain thru out body. Now with all the shakiness, nightmares, insomnia, numbess, pain, dizziness, and muscle spasms it feels like the muscles in my legs are permantly flexed, pain thru my arms, and the muscle across the upper part of my chest feels like its just hanging there and about to slide off, while I'm wearing a choker around my neck.  New symptom to add on today is it feels like I have a heating pad under my feet sometimes now (comes and goes). And my heart pounds alot. EKG was fine. They did a inflammation test before it had gone systemic and down into my legs bu that had come out ok, but nevertheless doesn't mean its not lupus, does it?  A lot of the other symptoms I have been having I have found in vasculitis and mutiply sclerosis, but as we all know lupus can mimic ms and can effect the central nervous system, probably one of the scariest ones of all.  Really hard to tell right now if its the lupus, or another condtion I might have developed. Really seems like Lyme disease as well. I have been useing the dreaded prednisone and I still can't get this under control, doesnt seem like the prednisone has been helping for last month.I did a homepathic treatment for greif and loss called natrum muriaticum you use for 4 days, benedryl at night and sleep md for sleep, I have started vitamins for fish oil bcomplex, b6, b12, and magnesium and vitamin c to try to get this under control.  I got 2 more labs done the ra came backin normal range and the ANA came back neagative this time... so does that mean that it cant be the lupus in any way?  Not even in the cns?  how in the world are you supposed to tell if you have been diagnosed with lupus already if maybe you have developed lyme disease as well?  Or maybe even ms if lupus mimics ms???   Please help.  My left knee seems to get better sometimes but then it comes and goes very painful!  and now getting the same pain in the back of my thigh above it. but I get more flushed with heat on skin and redness and shakiness all the time.... my migraines have also increased completly and doubled in pain.  Heartburn seems to be everyday mostly even with acid reducers.  Got really nauseas today too.  About 2-4 months ago I had noticed a small thing on my leg I kept pickin at which wouldnt come off.... dont remember it being black like a tick but it was the size of one... now it leaves alittle scare the size of one.  I am getting quite clumsy now....dropping things and such.... im not like that.  Also have some stiffness in my hands when Im sleeping.... and in my toes on the left foot alot (same side as my knee)


Things I have tried so far-Acupuncture, detox baths, epsom salt baths, sleep, rest,  fish oil, b complex, b6, b12, benedryl, now trying grapefruit seed extract for the last 2 days, vitamin c, michaels w-zymes (which incresed the spasms havent taken for 2 weeks)  magnesium,  adrenal health, prednisone, aleve, massage therapy.

[BeanBandit]

And I still forgot something.... they tested for white blood cell count which was high 14.8 I think...... and it went down a week later to 11.9 ( I think I was taking more prednisone at that time to doesnt make sense.... they said it might have been from the prednisone that I was on for only 2-3 days before the test, but the pharmacist told me it would NOT elevate the cells after only 3 days,

[ggma1000]

I had a lot of the same symptoms which have mostly gone away after taking an OTC desicated Raw Thyroid by Natural Sources (similar to what the Amour's was before reformulation) but also contains desicated raw adrenal tissue, pituitary, thymus, spleen...also kelp & rice bran. My husband had been on that for years after he could not tolerate Cytomel (T3) and then Synthroid (T4) did not help him.

My thyroid panel had been normal the summer of 2006 but my next blood work was Jan 2010 and was great except the thyroid. I knew I had adrenal fatigue for years, Lupus since 1955 (almost no flares since 1970) and Lymes several times...am allergic to almost all pharms, molds, pollen, etc. I was having multiple symptoms by January, not knowing what was causing them, so went to my doctor, who sent me to an endo who was only interested in putting me on drugs. NO thank you! By they way, my thyroid symptoms were quite different than my husband's...found out there are two types...both Hashimoto's.

When I started taking the Raw Thyroid, the brain fog disappeared when the first dose, as did the leg cramps which had been forcing me out of bed several times at night & morning for months. I have not had one since May. Other symptoms took longer and I have had to up my dose several times  (have had blood checked twice since I started). The hip joint and severe muscle pain in my legs which started out on both sides & settled on the right side lessened until I could walk upstairs normally most of the time...even disappeared completely from time to time.

I am also taking the herb Ashwagandha which has been used in India for several thousand years to impove both thyroid and adrenal functioning. It is an adaptigen which means it helps whether the gland function is either low or high to bring function to normal. Although it is very safe, anything in excess is harmful and so I have taken somewhat less than recommended doses.

One symptom I didn't realize I had was that my thyroid was swollen and had nodules, because it had swollen to the inside and was not noticeable. I already had a shelf in my throat from GERD years ago, so had trouble swallowing caps & pills, and tightness in my throat without it being sore. The marble sized swellings on either side I just thought were lymph nodes. OK, after I was taking the Raw Thyroid, those went down...one is now gone and the other is less than pea size (a 2nd endo felt it & said it was a nodule on my thyroid gland). Also as my thyroid gland shrunk, I could swallow caps again, small first, as bigger ones would catch below the first shelf, and now, they all go right down one at a time.

A lingering symptom which has improved some is the numbness & shooting pains, and feeling like I still had socks on at night after I took them off, etc. Have had those for many years. My dry eyes and mouth at night went away for a while on a bigger dose of Raw Thyroid than I am on now and came back. I can sleep better now most nights, too.

Although what I am taking has taken most of my symptoms away and brought my labs almost to normal, I want my own glands to do as much as they can on their own, so maybe I can quit taking these supplements. Back in the '70s I was able to quit taking everything after changing my diet and felt great for many years (headaches of twenty years also left when sugar was completely out of my system...YAY!). A visit to the holistic doctor (I went to some before she moved her office some 3 hours away) thinks there is a possibility of doing that again with another diet change. So I am giving that a try, too. Did have to add fish & eggs back as I lost too much muscle, causing balance problems. Regained most of that back already.

One big difference from you is that even back in the '50s and 60's when I had really major health problems, my family doctor did not give me any drugs...said prednisone was too new, then, to know any long term effects (now it is known that the long term effects can be devastating...when it quits working it can start making things worse).
Also, I learned that almost all digestive problems are caused by too little stomach acid and enzymes...even the GERD! So I have never taken anti-acids, but chew up enzyme tablets if needed and take probiotics, etc. too.

There is a lot of info on the Web, but you do have to be very careful because there is also even more hype and naysaying, too.

Did want to let you know that it is possible to get well again. So research, research, research until YOU know enough to know when to work with  your doctors or find news ones that you can work with. Years ago they did not have all these blood tests or drugs...they went by symptoms. You can do that partly on your own. It has been said on MedHelp many times and I will say it again. Everybody is different...what works for one person may not work for another...especially with auto-immune problems. Inflamation (inflammation) is part of the problem. I find that fresh ginger tea, cooking with tumeric and organic coconut oil definitely help both me and my husband.

[mommies4]

This is all alot to respond to but want to say that 1st i'm post surgery thats why I cant respond in leanth  Had a LP Shunt put in 3 weeks ago due  to  BIH .One of the things brought on and I'm haveing to deal with ,but much more Both  of you deal with alot of what I go through.I'm Amazed not shooked just floored.I have been saying to my family and friends AUTO-IMMUNE for years now Poss. Lupus or MS as I have a friend both with MS and LUPUS tells me I might have either of them. All my Lupus test is always Neg. 6 mths. ago My MRI report states WHITE MATTER DIEASE .So yes I'm confused
and really getting tired of just being Medicaided with everything Wrong Like NORCODICS Witch almost never work my CNS is most Deff. effected,Lyrica did help alittle,

I see that you guys use herbs ,, can you say they help you more?
Having a DX of Lupus , What Med is more likely to be perscribed to treat it ?
My gp says it could take 20 or more test to get a poss.? Why ?
What are the more common things that are associated with Lupus   EXP.
Virtgo,Leveto Rectalares  The common lupus rash I dont get (the wolf )
I do have Joint pain in my knee's are pretty bad ,no redness or inflamtion that I can see.
Behind the knee's ache really bad often with weakness ofcourse.
My Sed rate at one x was a 0 and a few mths. later was a 7 ,nothing I know concidering it could be very high ! I know .Just a few ?'s I thought of !

Thanks Guys Any answers ,I'd be greatful   xx mommies

[karajo]

Thanks ggma for sharing w/ us about what works for you.  I know I have shared some things w/ others that work w/ me, but they don't always do the same thing for them.

mommies4, To help you w/ lupus symptoms, here is a common list:

They are:
1. malar rash over cheeks (butterfly rash)
2. discoid rash, red raised patches
3. photosensitivity - reaction to sunlight, resulting in skin rash
4. oral and nose ulcers
5. arthritis
6. serositis - inflamation (inflammation) of the lining of the lung or heart
7. reanl disorder - excessive protein in urine and/or cellular casts
8. neurologic disorder - seizures, or psychosis
9. anemia or low white blood count or lymphopenia or low platelet count
10. positive ANA
11. positive anti-DNA or anti-Sm, or antiphospholipid antibody or false pos. syphilis test

Other symptoms are:
fever
abdominal pain
chest pain
shortness of breath
blood in urine
hair falling out
fatigue
muscle pain and weakness
dizziness
poor memory
headaches
poor circulation in fingers and toes
tingling in extremities
diarrhea
bloating
nausea
weight loss
abdominal pain
blurred vision
depression
palpitations
raynauds (where fingers turn white when cold)
intollerance to cold
sore throat
...to name a few

If you have lupus, it would help for you to spend time in the sun prior to your next ANA.  Even if it is a cloudy day, the UVA rays still come through the clouds.  What this will do is, cause there to be an immune reaction to the sun, thus causing the ANA to be elevated.  If you don't have lupus, it won't affect the lab results.  

[mommies4]

fever -  a low grade , almost always !
abdominal pain - yes
chest pain -got me really good last year,but still comes and go's
shortness of breath
blood in urine - not yet
hair falling out - has been for a few years now,alot falling w/every shower,getting thinner
fatigue - Every day of my life,from am to pm 24/7 for over a year now nonstop !
muscle pain and weakness - YES !
dizziness - Thought it was or is due to my vertigo
poor memory - sad but YES,alot in the past year !
headaches - Everyday for over a year I do have  ( BIH ) w/ a lp shunt
poor circulation in fingers and toes
tingling in extremities - YES
diarrhea - YES
bloating - feels like always
nausea - maybe due to my BIH , so I thought.
weight loss - I always have a problem with.I sometimes get down to 100lbs !
abdominal pain - yes
blurred vision - yes Maybe due to my BIH
depression - for years ,10yrs maybe
palpitations - Yes
raynauds (where fingers turn white when cold) - Doc has mentioned this to me,not sure
intollerance to cold  -  I found out last yr to a visist to the mall,I froz up,hands & feet bad
sore throat - almost all the time,sometimes haveing a hard time swollowing

I do however haave a bad case of tinea versicolor,has been on my face,neck and upper back.With surgery a few weeks ago it exploded ,maybe stress ? ! Not sure.

I did some digging on this and it gets complicating but ...

VITILIGO- is a sx of excessive Interferon,Interferons cause anti-ds-dna
Thinking maybe it could be why I show in my WBC test it's always slightly high.
Then i searched up my BIH problem this also for no reason list Lupus as a poss.
connection.

I know this is all theritic, I'm like the rest of us hear trying to find something that the Dr.'s might be missing.ANYTHING !
However all said I have yet to have a positive ANA ..
The other thing is Getting my Neuro to explain to me alittle more in deapth my MRI results.6 mths ago it said White Matter Diease .

So many ?'s                   THANKS  Karajo