undetermined autoimmune disease

[funkytown]

Hi, I was labeled as having Fibromyalgia/CFS a couple years ago.  But, since having my 2nd child (he is now 23 mo. old) i have been having so many issues. I am having severe migraines (spent 24 hours in hospital where they did MRI, MRA, CT Scan, chest X-Ray) and determined that I had what neurologist called a Complex Migraine it presented with garbled speech and I had bells palsy on the left side of my face.  Since then, I have continued to have migraines, at least 2 a week.  I currently take topamax 100 mg a day, fioricet as needed, and maxalt in cases when I can't get relief.  In addition to the migraines, I have places all over my body that I can't stand to even touch.  Some people refer to them as trigger points.  They are all over my body, some examples for me are the tops of my shoulders, top of my scalp, back of my neck, my arms, etc...I also have pain in what I believe would be desribribed as the cartilege in my sternum and rib cage.  As a matter of fact, I can't even touch my rib cage some days or rub accrossed it.  Today I went for a massage and actually told the therapist, please avoid my rib cage area, becasue it hurts to touch, he kind of looked at me like I was crazy.  I have a tearing sensation inside of my chest, (feels like it's cartilege as well) it also is sore to touch.  I get muscle fatigue and muscle pain.  An example of this is that some days I wake up and my thigs feel like your thighs would feel if you had done a lunges the day before and that pain when you go to sit in a chair or sit on the toilet the next day...lol...think this paints the picture.  But the pain also goes further than the muscle, it feels like it is in my bones.  Now, beyond my symptoms this is what I know for a fact my bloodwork has shown.  I have extremely high CRP levels, so high that my doctor said the nurse had never seen a 32 year old with my level before (whatever that means), my kidney level was high, my liver level was high, I am extremely B12 deficient (i do b12 injections) my doctor believes that the bells palsy i experienced was releated to the b12 deficiency.  I have vitamin D deficiency...early stages of osteoporosis, and their was something that showed up with my carbon dioxide and oxygen (whatever that blood test is) something about canceling eachother out or basically i'm working extra hard....i'm losing hair like crazy!!  the hair loss has NOT slowed down even with the B12 injections.  I was told that it's definitely autoimmune, but they are not sure exactly what, they are not convinced that fibromyalgia or CFS is the correct diagnosis (although, I sleep 12 hours a night and HAVE to sleep at least 2 to 3 hours a day NAP in order to function). I have been tested for LUPUP 3 times and it's been negative every time.  Anyone have any thoughts.  I would love feedback  (also, i am now having constant pain in my upper right quadrant with loss of appetite.  I have gone from 171 lbs to 150 since October, simply because I can't eat, not becasue I'm dieting, should this be a concern or should i assume that this 20 lb loss is autoimmune related

[elbamom]

If your practitioner, and you  are OK with doing more blood work, you might want to check out the diagnostic testing from the IDF. This is the immune deficiency foundation. The are free, and have loads of helpful info. Their website is www.primaryimmune.org  On the home page if you go to publications there is a book on specific tests to confirm or rule out types of immune deficiency.

They will also send you the book for free. They are helpful and a huge support group to get involved in. They say there are 150 known different immune deficiencies. Most docs just don't know about this kind of disease. That is why the foundation was started. They believe that auto-immune and immune diseases are just different sides of the same coin.
If these tests had been run on my daughter, we would have found part of the answer years earlier!

Keep searching and don't give up.
Everyone deserves good health!
elbamom

[TheLightSeeker]

Hey Cara and funkytown.

Are you on a low oxalate diet? Look into the Oxalate and the Pain Project.
Are you taking any Calcium supplements? What type?

If you're on Calcium:
a. Does you body benefit from this or does it suffer from this?
b. If not on Calcium Citrate ,but a different type, you might be promoting kidney stone formation, a possible cause of  hydronephrosis.

Funkytown, unfortunately the way most meds are designed, their default
function is symptom management and not organ protection.
There are bodily mechanisms that protect your organs, however, impaired
energy at the cellular level, compromises these protective mechanisms,
greatly. Supporting your immune system properly is a more fundamental way to achieve this.
Look into Essiac Tea, one of the classic immune boosting remedies,
originally formulated and used to treat stage 4 cancer patients by  Rene
Caisse -the "Cancer"Nurse from Bracebridge Ontario.
She treated thousands, fought to get approval for Essiac for Cancer treatment, but...you guessed it! It never happened, it never will!
Even if thousands got successfully treated with Essiac!
There's no money to be made apparently as it is a natural herbal remedy
and it can't be patented, so Pharmaceuticals won't invest in the Clinical trials to get it approved as a cancer drug. Only approved drugs can be used
for cancer treatment. Sad. Hmm, I wonder what the Cancer Society
would say if they were asked to consider investing in the clinical trials,
themselves. It's our donation money they're handling, right?
Sorry i went off topic!

Anyway, I thought that these suggestions might help a little.
Blessings,
Niko

[karajo]

I get those same pains in my kidney area.  And it seems more promonent on my right side too.  There has been much discussion and test to see what is going on there because the pain shuts me down.  It hurts to breathe, move anything.  It feels like when I had a kidney stone.  I do have mild hydronephrosis, although the last CT showed my kidney had gone down to almost normal size.  It seems to be intermitant.  But sometimes, this pain is in the front and sometimes all the way around, like there's a rubber band around my waist.  This makes me think I may have MS.  

Praying for you my sweet sister.  We all have so much to be thankful for.  I'm believing for miracles, as I know God is able to do abundantly more than we can ask or think.  

[funkytown]

I have not been supplementing with D3, but should try.  I am also interesteds in the other supplements you mentioned for the migraines...as I am already finding that the B12 injection (although slowly) is making a difference.  I can only imagine that supplementing with the right things could make a difference in improving my other issues.  I am asking my nurse practitioner a lot of questions and getting a lot of feedback and answers.  He's been very open to doing test, panels, etc.  He was so blown away by my first panel of bloodwork that came back that he told me that any changes that I noticed he wanted a phone call, that I didn't necessarily have to come in, because he was so interested in my case. I know the Lord has opened up this door for me to finally get answers.  I really feel like I'm going to get somewhere this time.

[elbamom]

All the above posts seem helpful, you didn't say if you are supplementing with D3 and if so how much. It does take time to build up in the body and the more medical issues the more your body needs. It is cheap at Costco, walmart, etc.
Lots of free info at www.vitamindcouncil.org
I take 10,000 IU a day with my Doc's blessing and my level was 57 at the last blood test. The council recommends levels between 50 and 70 for optimal health. Enough D3 will help with the osteoporosis but it takes time to see results.

Do you take any supplements for the migraines? My daughter added magnesium, and Coenzyme Q – 10 she said these have helped her.
Have you had a vitamin panel run? maybe something else is low not just the B12?

Good luck and stick with finding out the answers!
elbamom
Hang in there

[funkytown]

I'm so thankful I got on and read this today. I woke up very discouraged.  I'm having terrible pain in what I think is my right kidney.  The pain has been gradual and I wasn't sure that it was my kidney, but now I'm pretty certain it is, because the pain is also radiating to my back and I am also have the same pain every once in a while on the left side.  considering I have a kidney on each side, it makes sense.  I was just having a conversation with my husband and telling him that once again I felt like it was another pain (symptom) or downfall (if you will) to this autoimmune issue and it's so discouraging.  Yet, my faith in Christ manages to keep me encouraged and reminds me that it's going to be okay.  I trust in him mostly to cast out all fear.  I rely on him daily for that!  Your message of hope resounds in my heart today.

[karajo]

Yes we do have a lot in common.  That's really neat.  

I agree that sometimes there is damage that is done if you don't get on some medicine.  But generally, a family practicioner won't put you on plaquinel on an ongoing basis.  They will continue it if a rhematologist will put you on it.  I know my family dr. would give me prednisone for flare ups before the rhematologist put me on plaquinel.  

Honestly, your symptoms do sound like lupus.  I would keep a diary.  What I did was I kept a calender where I wrote what was going on each day.  I had bad days and horrible days and every once in a while I had a day I felt like washing the dishes and washing a few loads of laundry....then I was exhausted and ready for bed.  Plaquinel made a huge difference.  But it took at least 6 months for me to see the affects.  I also did some physical therapy to help me get back on my feet.  Little by little I kept getting stronger and stronger.  Now I can work like a man on most days.  Praise the Lord!  I'm an plum excited about what God has done in my life.  I feel like He has given me a second chance.  I once was dieing and now I'm alive.  I say this to encourage you and other people reading.  My God is so awesome, my God is miraculous, He is incredible and He does more than I or you can even ask or think.  

[funkytown]

thank you for responding...I read your profile @ karajo...we have quite a bit in common..lol.  I too am a homeschool mom.  My husband is in ministry,  we are waiting for new placement in a church so are in transition right now.

I have done some research costochondritis- and have thought that it fit the symptoms that I was having.  some of the other things that has confused me is how many of the LUPUS symptoms I tend to have for example: photosynsetivity, hair loss, kidney issues, fatigue after being sun exposure, fatigue after physical exertion ESPECIALLY EXERCISE, etc...i also have areas on the arms chest and shoulders and face (butterfly rash) that are red in appearance.  But I am in agreement with you that it it's multiple things...I'm wondering if I should just let go the idea of getting an official name or diagnosis and just be satisfied with the fact that I have a caring practictioner who is listening and seems to be treating me.  My worry just is just that with some autoimmune diseases I know that some things can't be overlooked because some organ systems can truly be damaged if not treated with proper meds.

[karajo]

I think you've got multiple things going on.  I don't know how long you've been on B12 and vit D supplements, but I think you will see some improvement over time.  I know I didn't see instant results, but little by little I saw some improvement.

Look up costochondritis - this is inflammation of the junctions where the upper ribs join w/ the cartilage that holds them to the breastbone or sternum.  It is common in fibromyalgia.

[funkytown]

i also am having fulness like fluid feeling in my knee joints and left wrist on a daily basis...forgot to mention that my joints hurt.  Now i'm officially done with my comments...I'm telling you all it's been viscious or maybe it jsut feels that way since I'm the one experiencing it.

[funkytown]

I also take cymbalta 30 mg each evening which has helped with the overall body pain.

[funkytown]

Hi, I was labeled as having Fibromyalgia/CFS a couple years ago.  But, since having my 2nd child (he is now 23 mo. old) i have been having so many issues. I am having severe migraines (spent 24 hours in hospital where they did MRI, MRA, CT Scan, chest X-Ray) and determined that I had what neurologist called a Complex Migraine it presented with garbled speech and I had bells palsy on the left side of my face.  Since then, I have continued to have migraines, at least 2 a week.  I currently take topamax 100 mg a day, fioricet as needed, and maxalt in cases when I can't get relief.  In addition to the migraines, I have places all over my body that I can't stand to even touch.  Some people refer to them as trigger points.  They are all over my body, some examples for me are the tops of my shoulders, top of my scalp, back of my neck, my arms, etc...I also have pain in what I believe would be desribribed as the cartilege in my sternum and rib cage.  As a matter of fact, I can't even touch my rib cage some days or rub accrossed it.  Today I went for a massage and actually told the therapist, please avoid my rib cage area, becasue it hurts to touch, he kind of looked at me like I was crazy.  I have a tearing sensation inside of my chest, (feels like it's cartilege as well) it also is sore to touch.  I get muscle fatigue and muscle pain.  An example of this is that some days I wake up and my thigs feel like your thighs would feel if you had done a lunges the day before and that pain when you go to sit in a chair or sit on the toilet the next day...lol...think this paints the picture.  But the pain also goes further than the muscle, it feels like it is in my bones.  Now, beyond my symptoms this is what I know for a fact my bloodwork has shown.  I have extremely high CRP levels, so high that my doctor said the nurse had never seen a 32 year old with my level before (whatever that means), my kidney level was high, my liver level was high, I am extremely B12 deficient (i do b12 injections) my doctor believes that the bells palsy i experienced was releated to the b12 deficiency.  I have vitamin D deficiency...early stages of osteoporosis, and their was something that showed up with my carbon dioxide and oxygen (whatever that blood test is) something about canceling eachother out or basically i'm working extra hard....i'm losing hair like crazy!!  the hair loss has NOT slowed down even with the B12 injections.  I was told that it's definitely autoimmune, but they are not sure exactly what, they are not convinced that fibromyalgia or CFS is the correct diagnosis (although, I sleep 12 hours a night and HAVE to sleep at least 2 to 3 hours a day NAP in order to function). I have been tested for LUPUP 3 times and it's been negative every time.  Anyone have any thoughts.  I would love feedback  (also, i am now having constant pain in my upper right quadrant with loss of appetite.  I have gone from 171 lbs to 150 since October, simply because I can't eat, not becasue I'm dieting, should this be a concern or should i assume that this 20 lb loss is autoimmune related