Still no diagnosis, 5 years later. Help!

[Naptime73]

5 years ago, I started getting strange symptoms which included joint pain, muscle pain and weakness and extreme fatigue. I saw neruologists (all clear) and a rheumatologist, who said my test results were not showing anything (ANA count was 1:40 in the beginning, then 1:80). The last test I had 4 years ago showed my ANA was 1:160.

My symptoms eased and I started to think the doctors were right, and it was just a virus - until a couple of months ago, when the symptoms started resurfacing.

Retesting showed my ANA is now 1:2650 Homogenous pattern. ENA all came back negative, as did the CCP.

The GP said it isn't lupus, as I don't have the skin problems. And all he can say is it is an autoimmune disorder, but it is non-specific.
Another GP I had to see today said the ANA could simply be nothing as it can fluctuate so much - and I might not even have an autoimmune disorder. That made me feel like I was just faking, and making everything up (although she did support my decision to see the rheumatologist again).

I can't believe I am back in this position again. Still asking questions, still unsure of what is going on. I feel the doctors minimise how I am feeling, as does my family.

I just feel so alone and desperate.

Naptime73

[marciaposey]

I was tested for asthma and was cleared.  Later I found the difficulty with breathing was associated with the liver condition also. Sorry so many details to remember.

[marciaposey]

Hi, My health issues sound very similar to yours. I had extreme fatigue, dry eyes, and joint pain. My doctor said my fatigue was due to my hectic schedule my dry eyes were from lack of sleep and my joint pain should be addressed by a rheumatologist.
The rheumatologist gave the all clear.
I switched doctors. My new doctor sent me for numerous test which gave me comfort because finally someone was taking me serious and was not telling me it was all in my head. The testing showed a tumor on my liver. The tumor was removed and the symptoms went away for about five years then resurfaced. .More testing showed I have autoimmune cholangitis and chronic liver disease.
Have you had your kidney and liver tested? My understanding is this can be done through blood testing.
My doctor told me the blood testing done on liver was clear for years because I was borderline.
mpme

[Naptime73]

Well,  now I am really confused! I received my DsDNA results, plus another ANA count.
Ds DNA was only 4. But what confused me is my ANA is now only at 320.

What does that mean?

Thanks,
Jo

[DrCNM]

Read "The Immune system recovery plan" by  Dr.Susan ****, I went through a similar situation and this book really helped me know what to do for myself and what to ask my doctors about.

[TheLightSeeker]

Hi again.

I should be more clear on the testing for thyroid.
You may be one of millions who have thyroid resistance resulting in low thyroid function, yet "standard" serum tests come back fine.
What matters most is cellular function, something that Endocrinology has been ignoring by only testing TSH, T3 and T4 serum levels .
If you have not been tested for Free T3, Free T4 and Reverse T3, thyroid
dysfunction has not been ruled out!
This is the reason I mentioned Dr. Barnes Basal Temperature Test,
one of the easiest ways to verify low thyroid and low adrenal function, barring an active infection at the time of testing.

The main issue here is that sufferers who fall through this "crack" and never get diagnosed and treated for hypothyroid and /or low adrenal function UNKNOWINGLY, not only risk remaining in their present state of disease/suffering undiagnosed or even worse misdiagnosed, but also run the risk of more serious and potentially irreversible disease processes.
In regards to low adrenal function, cortisol regulates the immune cells in our gut so when cortisol is depleted those cells become dysregulated, making us more susceptible to pathogens like bacteria, yeast, and parasites. Dormant pathogenic infectious conditions, become activated
disrupting the integrity of the cells of any organ, any body system, leading to chronic A/I and degenerative conditions.
You may want to do a search here for Dr. Garth Nicolson, a part time
Expert on MedHelp and also a leading expert in Pathogenic Infectious Conditions, leading to CFS, MS, FMS, ALS, GWS and more!
These types of infectious conditions are notoriously difficult to detect through standard testing and most Doctors even Infectious Disease Specialists are not properly trained in this field
of medicine to help the patients.
Let me know if you need any more details.

Best wishes.
Niko

[Naptime73]

Oh, and it is interesting you mention thyroid. Every time I see a new doctor, they say "your thyroid is enlarged, we had better do some tests". It may look enlarged, but the tests always come back fine.

[Naptime73]

Thanks for the responses. My GP ended up letting me have the antiDS- DNA test. Just waiting for the results...
I can't get in to see the rheumo until August next year! A long wait, that's for sure!

Thanks again,
Jo

[TheLightSeeker]

A high ANA with homogenous pattern is not enough to diagnose
anyone with Lupus as it is not 100% exclusive to Lupus ( statistically it is, however, pointing mainly to Lupus) , however, your doctor might be wrong in excluding Lupus because of the absence of skin symptoms!

The following is from the American Lupus Society:
To help the doctors diagnose lupus, a list of 11 common criteria, or measures, was developed by the American College of Rheumatology (ACR). ACR is a professional association of rheumatologists. These are the doctors who specialize in treating diseases of the joints and muscles, like lupus. If you have AT LEAST FOUR of the criteria on the list, either at the present time or at some time in the past, there is a strong chance that you have lupus.

Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
Discoid rash – a rash that appears as red, raised, disk-shaped patches
Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
Oral ulcers – sores appearing in the mouth
Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed
Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)
Kidney disorder – persistent protein or cellular casts in the urine
Neurological disorder – seizures or psychosis
Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
Immunologic disorder –anti-DNA or anti-Sm or positive antiphospholipid antibodies
Abnormal antinuclear antibody (ANA)

What I would suggest is to see again a Rheumie, now that your ANA is positive at 2560 ( it goes 40-80-160-320-640-1280-2560 until a negative is reached.  Low positive titers are usually treated as negative up to 160 and that is why you were not checked further in the past.
There are some more tests you need to rule out Lupus, but one thing I would point out to you is the possibility of thyroid dysfunction, which if left untreated for long may lead into Lupus or other serious condition, when there's serious organ involvement, should you not have developed such a condition yet!

Consider doing Dr. Barnes Basal Temperature Test on your own, but please follow the simple directions exactly, for accurate results.
This will indicate low thyroid or low adrenal function very easily.

My ultimate suggestion is to take charge of your own health matters,
as much as possible, if you really want to improve your health status,
instead of possibly becoming disabled due to the development of some chronic degenerative or autoimmune disorder.

Ask questions, do research, read books, do anything to deepen and widen your knowledge in health matters, so you can be more proactive in pursuing wellness and improved health.
You are still fairly young and you can enjoy a long healthy life, if you make the right choices.

Should you have any questions, please post again or message me directly.

Note that the above is not intended as a substitute for medical advice.

Wishing you well.
Niko

[pooh55811]

I agree that it is a good idea to see your Rheumatologist. I hope you have a very good one.

It is true that people can have a positive ANA and not have an autoimmune disorder, but the higher the number the more likely it is that one has an autoimmune disorder.

Hopefully your Rheumatologist will order more than the ENA test. And hopefully your Rheumatologist will go by your history and your symptoms, as well as your test results. Keep in kind that people can have negative specific tests and still have the specific autoimmune disorders. Only a certain percentage of people show positive blood tests but that does not mean the people with the negative blood tests do not have the autoimmune disorder. A good Rheumatologist will also make a diagnosis based on history and symptoms as well as blood test results.

My PCPs were not interested in my symptoms either but I went to see a Rheumatologist who is affiliated with the university medical center. She did an excellent exam and work-up and ordered about 39 blood tests and panels. Most were negative but the Sjogren's came back positive. Incidentally, I have had Sjogren's for years even though the Sjogren's antibody test was negative 2 years ago. Now it is positive. I never knew until last August that I had Sjogrens, but I have had the symptoms for years. My PCP missed all of the symptoms. Anyway, now I am diagnosed and on treatment.

A low Vit D level is common in several autoimmune disorders.

Best of luck with your upcoming Rheumatology visit.

[Naptime73]

Thanks for the response, my blood shows there is no malnutrition, and the only thing low is Vitamin D - which is an ongoing issue for me, as the sun is not my friend. I am back on Vit D supplements.
Celiac has been investigated, and ruled out.

I do still walk, and try and exercise other ways as well. I live on a property, so there is no chance to be idle!

But the pain and weakness still continues... As does my frustration at not knowing what this is...

[Caryopteris]

I'd get tested for Celiac disease as the symptoms vary so much and many of them are related to malnutrition.  

Try magnesium citrate in the morning and vitamin D 2000 IU and calcium at night for pain relief and relaxation.  Try yoga or Pilates or weight lifing with small free weights.  Proper posture and form are extremely important.  Swimming and walking are other exercises you should add to the mix.  Whatever you can and will do.  If walking is boring, hike in the woods.  Borrow somebody's dog.  Move the body.  Do yard work.  Dance to your favorite music til you are exhausted.