Frazzled

[Rainfall1]

Hi,
is anyone else waiting for a diagnosis of an autoimmune disease?  I am waiting to see a rheumatologist and am seeing an orthopedic surgeon.  Autoimmune suspected because of high sed rate and rash.  I am out of work and going nuts waiting for answers.  Would like to share with someone that has been down this road.  Thanks!

[Rainfall1]

I had my appointment today and my rheuematologist seems to be thinking I have  sapho syndrome.  He pulled it up on the web, and I must say I have most of the symptoms, blisters on the palms and soles, pain and swelling around the clavicle, terrible arthitis and elevated esr.  He is rechecking my ana and sed rate and checking for the hbla27? gene that is positive in 95% of people.  He also sent me for X-rays, the tech told me my SI joint is totally fused, another hallmark of the disease.  I am to see him in 6 weeks, and stay on the prednisone and painkillers until then.  Don't ever let anyone tell you you are crazy!  My symptoms started 10 years ago, and so many doctors told me I was depressed and anxiety ridden.  It devastated me, and ruined my faith in medicine.  Started with terrible vertigo and then rib pain and nobody ever did any testing for ai.  I finally found a doc to listen, and luckily had the high ESR to match.  Hang in there, I feel so validated to have a possible diagnosis.  Has anyone else been diagnosed with SAPHO syndrome?  Thanks,

[Rainfall1]

Thanks for the good wishes.  I go tomorrow morning and am a nervous wreck.  It is so scary to not know what is going on, but whatever it is I hope I get some answers soon.  What are your symptoms?  Have you had any blood work done with any abnormal results?  My primary care has been treating me with prednisone for the last few months to help me get through.  I know what you mean by your psyche being worn down, it really gets to you when you can't do the things you have been doing your whole life.  I haven't worked since June, and due to all the doctor visits am a financial wreck.  Even with good insurance.  If you are having arthritis issues, it might help to go to an orthopedic doc, they at least are helping to control pain and have done tons of imaging, so I can go to the rhuematologist with those.  Have you ever tried valerian tincture for your anxiety?  It really does help.  I also have a very light prescription for Xanax, that I use only when absolutely necessary. Thanks for responding and I hope to hear from you again.

[skyebluesky]

Good luck at your Rheum. MD. I also am having to wait 4 months to see one (why aren't there more MDs?). The Lightseeker, thanks from everyone for all your good information. I personally am making an appointment with a psychiatrist to try to get some meds to knock the anxiety out of my system. My issues, with no resolution, going on for months has worn my psyche down so badly that I am starting to have panic attacks and just don't want to go out of the house, try to shop and live any regular life I used to enjoy. I am not sure what anxiety med is best. When you hear tv adds, all meds seem worse than the ailment they are supposed to work for. If anyone knows a less innocuous one, I hope it can be suggested. Getting no where with MDs is both expensive and frustrating (and sometimes particular ones can be arrogant and demeaning which makes you feel worse). I hope you have good luck and relief soon. Wishing you the best!

[Rainfall1]

Hi,
My cat scan results were normal.  The ortho doc said he does not know why I have this swelling over my collar bone.  It has been there for a long time.  I will have another MRI next week of lumbar spine to try and diagnose where my leg pain is coming from.  It is honestly interfering with my quality of life and making me very irritable.  Once again my palms are covered with with little blisters.  It seems whenever my pain level rises the blisters come, even though me esr is a normal 14, compared to o 75 the first time it was done.  The ortho did c says he does not think it would s AI because the pain is only on one side of my body.  I will finally see a rheuematologist a week from Friday, it took 4 months to get an appointment!  You have such good advice Lightseeker, but I am so overwhelmed and depressed I have a hard time absorbing and acting on it.  I have been out of work since June, and every time I think I can go back something else flares.  Cannot afford to go to a naturopathic doctor because they (or most) do not accept my insurance,  Thanks for reading, I feel like I am whining.  

[TheLightSeeker]

Try supplementing with methylfolate (this is linked to MTHFR gene mutation or methylation issues), to see if it helps with the allergies, as a trial.
It is necessary for breaking down histamine through the action of SAMe,
which is in low levels when your methylfolate is low.

SAMe is responsible for signaling over 200 enzymes which have to do with
DNA protection, cellular membrane integrity, allergies and so much more.
Low levels of SAMe have been linked to serious diseases, like cancer and MS

You may also be neurological B12 deficient (methylcobalamin), so a trial of sublingual methylocobalamin may be warranted as well.

One day at a time. A short slow walk to the store, even if a bit uncomfortable is better than nothing, if your body can endure it.
Your neurotransmitters may be imbalanced, if you have any of aforementioned issues, so you may be receiving enhanced pain signals.

Blessings
Niko

[Rainfall1]

I have been diagnosed with allergies by an ENT to just about everything air borne, but have not had treatment in years.  it was too overwhelming.

[Rainfall1]

I am just so curious as to why me ESR is 14 when i still am feeling such inflammation in my body.  When it was at 75 in June before I went out of work, i was in excruciating pain and running a fever.  I am not that sick right now, but still feel bad.  Also, it really freaks me out how the pain moves around my body.  Left side to right side, top to bottom.  Sometimes my ribs and collar bone are involved, you can see the swelling.  Thanks for your answers, I am going to try my best to cut gluten from my diet again.  Not one doctor has ever mentioned it to me.  I did have a colectomy due to diverticulitis about 7 years ago.  I wonder if this could have damaged my gut.

[Rainfall1]

you are very kind to respond.  i did go gluten free along with my partner for about 6 months.  i didn't notice a big difference, buy he swore his arthritis was better.  Maybe it was keeping me from going down hill.  Of course we fell off the wagon on a cross country road trip, i believe it was bread as we were traveling and it seemed easier to get a sandwich!  My primary care doc has not done any of the tests you mentioned, she said that she could order more tests, but would not be able to interpret them, so will leave it to the rheumatologist.  I have not been exercising at all because of this damn sciatica.  I have been off from work for 4 months, and have put on at least 15 pounds from inactivity and I think the 3 courses of prednisone.  I weigh abput 170 now and am almost 5'6".  My partner encourages me to walk all the time, but right now i look at it as nagging!  It does really hurt, even to go to the store.

[TheLightSeeker]

Hey Rainfall1.

Whenever autoimmunity is suspected or identified (elevated TGF beta 1 with low CD4+CD25+ cells drives production of antibodies to gliadin and cardiolipin), you'll want to remove gluten from your diet.
Try it for 3 months minimum, as the effects of gluten, still linger around for months after its elimination from the diet.
Warning! Gluten is in many foods and products, which you do not suspect.
Shampoos, cosmetics, play dough, soups, condiments etc and may not even be listed as an ingredient. Make sure you print an "Illegal" list off the internet.

Please find someone totally neutral and unbiased, with medical background, to do a realistic benefit-risk analysis for previstatin.
My own personal opinion is that the confirmed risks of taking statins grossly overweigh the "potential" benefits, when one has not suffered a heart attack.
Your nervous system, your endocrine system, your cells, depend
on ample levels of cholesterol for optimum function.
There are natural ways to improve your cholesterol ratios and lower triglycerides. Cutting down on carbs will achieve the latter.
I have yet to read one reliable study (not like the botched ones where they feed powdered cholesterol and oil -it oxidizes really fast creating arterial damage, normal cholesterol does not oxidize- to the rats and they end up dying from heart disease in a few weeks) that has proven the statin benefits.
This is a very delicate subject and I cannot recommend to you to discontinue previstatin.
Perhaps an ND might be more suitable to assess this for you.

Any recent studies, debunking the claims of the statin proponents are not likely to change recommendations and policies, as doctors have been prescribing these for years and it's ingrained in them and will continue to offer outdated advice and treatment.

Do you know/did you ask what caused your chronic nerve damage?
Are you doing any physio? Are you able to engage in any physical activity?

Your lymphatic system needs some stimulation though movement like walking, proper diaphragmatic breathing and massage for proper flow and drainage.
You may have lymphedema of the neck, with Increased pain as a result of the compression of nerves.

Best wishes.
Niko

[Rainfall1]

before my prednisone burst i was feeling lousy.  feel much better afterwards.  my doc tested sed rate before prednisone and it is 14.  this is down from 75 4 months ago with a reading of 39 2 months ago.  All other labs normal, including thyroid, ana and ra factor.  i am seeing a rheumatologist 10/10.  actually my lipids are quite high, about 250 and my triglycerides are over 400 so am on previstatin for that.  when i start to feel bad i break out in blisters on the palms and soles. also siatica and neck pain become unbearable.  the ortho doc i am seeing sent me for a ct scan today to rule out a tumor due to a swelling on my collar bone.  my mri showed a great deal of damage to my neck, i have the report, and the emg/ncv showed chronic nerve damage in my right arm.  he has not looked at my lower back yet.  i am out on disability and afraid to go back until i know what i have, as i feel work made the pain worse.  now that me sed rate is normal, could this still be autoimmune?  am i barking up the wrong tree? thanks so much for taking the time to read this!

[Rainfall1]

i just posted a long comment and lost it let me make sure this works.

[Rainfall1]

thanks for replying.  i think allergies. ay have something to do with all this trouble.

[TheLightSeeker]

Hi Rainfall1.

It saddens me to read about your suffering, however, while you're waiting
for the next appointment, more test results, another medication to work, another specialist...well you get the idea, it might be a great idea to explore
alternative and complimentary things on your own, including lifestyle and
dietary changes.

I have managed not only to  return back to back to normal health- from a very dark and painful place-, but to reach the best health possible in my entire life, without the help of conventional doctors or meds, more or less on my own!

Trust me, I went through the medical circuit from Rheumies, to Neuros, Orthopedic surgeons and kept going downhill.

My awakening came when my Neuro was suggesting to see a Psychiatrist,
after I argued that he had my files mixed up with another patient (I just knew it since nothing he was saying matched my case), which was indeed what had taken place, as I found out later! What I bloody circus!!!
It was then that I decided to take health matters in my own hands and I never looked back. I just despised the fact that my life had become so vulnerable, trusting the medical system blindly, to take care of my health.

This is not a typical case and I'm not advocating in any way that you all fire your doctors and become your own health gurus!
However, there are many steps you can take on your own, which will make a world of difference.

Some suggestions:
1.Get educated as much as possible. Knowledgeable and informed patients
make the best ...patients and tend to have higher recovery rates.

2. Try eliminating gluten, wheat, grains & dairy in this order, successively, leaving 2-4 weeks in between, so in about 2-4 months you will have eliminated all of them.
You will have taken away the most offensive foods associated with A/I
conditions.
For lab testing  look into Gliadin test (urine), by Cyrex labs. They test 12 forms-not just the alpha ordered by most doctors- of Gliadins regarding Gluten intolerance (not necessarily digestive).
Now they can also test which part of the body is affected.
Also look into their cross reactive foods tests.

3. Dr. Coca's Pulse Test, it's a free download, and it will indicate within a week,any reactivity, any allergies, any intolerance and sensitivity to anything ingested, that is considered offensive by the immune system.
It is a great self-test, for the degree of accuracy, however, should you find it too difficult to do because of your work, there's a simplified version that I can send you, as second option.
Never mind; It takes just an extra minute to find it.
Here it is:
Dr. Cocoa's Pulse Test (simplified version)Just sit in a chair and come to rest for about 5 minutes. Take your pulse for a full 1 minute (not the 15 sec. multiply by 4 thing). Then put whatever you want to test in your mouth and chew it for 30 seconds. Then take your pulse again. If you find it is faster by 6 beats, you are allergic or have a sensitivity to it. If you have type “O” blood, use 4 beats as the criteria instead of 6. It’s that simple.

If you send me a brief medical history, including meds, weight, height, age,
diet, symptoms, fitness level, family situation and relationships, sleep quality, stress levels, past traumatic events, etc., I might be able to offer you more specific suggestions.

Blessings.
Niko

[Rainfall1]

Back on another prednisone burst.  Will be curious to see what my sed rate is now.  Can't wait to see a rheuematologist next month.  Can a flare last for a whole year?

[Foggy2]

I empowered myself by educating myself through the Internet and other means, join support groups, talk to others who might understand my conditions.  I found that very few understood my conditions except people who actually experienced it themselves.  Keeping copies of my medical records, diagnostic tests and labs along with the research I did helped me track my conditions.  Along with the research I did, I wasn't afraid to ask questions to my physicians.  With autoimmune diseases, you often have to be proactive and be your own advocate.

Let us know how you do.  In the meantime, we're here to support you.

[Red_Star]

Yes I researched and pushed for labs despite resistance from doctors to test for them.

[Rainfall1]

I am so sorry to hear that.  Did the web help you to figure out what was going on?

[Rainfall1]

thanks!  It is so hard to talk to others, family and friends are great, but they really don't know.  Did you get a diagnosis?  Except for a sed rate of 75 my labs are normal, including ra factor and ana.  My mri shows a lot of damage.  It is so frustrating!  The orthopedic doctor will not even look at my lower back until he is finished diagnosing my neck.  I feel like I am in the twilight zone!

[Foggy2]

I've been done the same road, and it's very frustrating not having all the answers and feeling lousy.  I can suggest that stress makes things worse, so try to relax.

Keep copies of all your records and labs.  If someday you need to go on SSD, you will need these and dates of visits.

Hang n there and know you are not alone. :-)