Desperate for advice

hi. I can share my story with you but working at the minute. Would rather pm you anyway if you don't mind. Hopefully I can make some helpful suggestions for you about where to go next.

Hi,

I think most of us have been there. In y case ONLY ONE test showed something and I did it on my own between the two tests the doctors had ordered. I have always gotten normal results for almost everything. But the symptoms are there and my doctors see them.

You could be having several conditions at the same time that are connected to your immunity problems. What you are saying about the tongue reminds me of oral candidiasis. Candida is just using the opportunity to (over)grow.

For candida and your other autoimmune problems I'd watch my diet - no sugar whatsoever, no grains and starchy vegetables, fruit in moderation (because candida feeds on all sugars), dairy, I'd avoid red meat...

Right now, my AS flare up is still here and I'm having an allergy (and skin breakouts and worse hirsutism) after a prednisone treatment. It probably made a difference, but I still feel pain in my back and my right hand is swollen. Sometimes it just takes time. However, I'll do short liquid fast (water, herbal teas and mostly vegetable juices) to see what happens.

Good luck!

Kelsey,

Sorry for your infliction and the frustration you share with it. I am no medical professional first and foremost. During these tests have they (doctors) conducted allergy tests? have you noticed certain medications that react either positive or negativity during these symptoms? Were you tested at the height of these symptoms? I have had some terrible flares and during such flares tested positive for ANA. As my flares wane, mostly when medication is used I test negative for ANA. Some of these conditions are hard to find and it is extremely confusing and frustrating to put it mildly. To me it sounds similar to fibromyalgia, but I couldn't begin to know where to start from a medical standpoint. I am also a 3+ year, undiagnosed sufferer of an unknown condition that resulted in many medical offices, many doctors of various kinds with many medical bills and debts as a result, so I not only share your pain but I offer at the very least, that I hope you realize you are not alone, some people go through many, many years until they find the right doctor that uncovers their hidden illness. Your advantage is that the sciences are getting better as well as the technologies to help solve these riddles. Keep hope strong, this will eventually be found out. If you are here, you are desperately reaching for answers like the rest of us, self-diagnosing like the rest of us, Googling everything, finding things that fit, then told no, this isn't what you have. Maybe you feel that the doctors dont fully understand the scope of your infliction and that you are not being taken seriously. This isn't the case and some doctors are so textbook that they simply are not the fit for what you are experiencing. If anything, until you find answers, know you have a community that can empathize. Not an answer, I know, but people are listening.

v/r

Adam

Hi Kelsey

If you are in the USA and do not have medical insurance, my advice could be problematic ( I am in England, the land of free health care )

You do not need a Dr, you need to see a Rheumatology Consultant, then a Musculo Skeletal Consultant. In that order. But the last consultant is more knowledgeable about more Auto-immune conditions.

In the UK, Doctors know very little about Auto-immune conditions; they are after all General Practitioners and we do not expect them to. But if they are any good, they will make you an appointment to see a specialist. As it was in my case 10 years ago.

It is well known that specific indicators in blood results, do not have to be present at every blood test. I have been positive AND negative ( 6 monthly) over 10 years.

I have Systemic Sclerosis with overlap Sjogrens Syndrome. Scleroderma. Inflammatory Arthritis. Reynauds Syndrome and now pulmonary Fibrosis. I have good days and bad days, but Im still here 10 years later. Its how you handle your conditon that counts, as you know you best.

Do get yourself tested for Vitamin D deficiency at the least. It is very important.

John

Kelsey, heads up... don't give up. I have been on this hunt for the past 7 years real hard and I refuse to give up. You can get through this, just don't give up. You matter, so don't allow any Dr to make you feel like you do not. If your current Dr doesn't stay on top of trying to actively Diagnose you, then find another who will put You first, even if you have to remind them that's what they are paid for. Don't let anyone put you in that corner!

Genetic Testing will only help if it's a Hereditary Disease and that can be vitally important information to gain in this search. If no one in your family has health issues like you do, you have a good chance you are barking up the wrong tree though... still vital info to be had there. I would try another type of Specialist at the same time (to save time). Either a Rheumatologist, a Rare Diseases Dr could gain you a great deal of vital information that can help you down this road as well.

I hope something I said helps in some way, just don't give up. I have been on this hunt for the last 7 yrs real hard, seeing Dr's several times a month. I finally have an Apt with a Dr who see's Myositis Patients, I hope he can give me the Diagnosis I have been searching for for so long now... but even if he doesn't my next stop is Mayo Clinic. I refuse to take, "I have no earthly idea what is wrong with you" or to believe it's just "All in my head". I did not get regulated to a wheel chair and stop my entire life just to buy into that pile of garbage, nor has anyone else who is looking for an answer to why they are in so much pain without a proper diagnosis. We cannot help what we cannot verify and we cannot get help for what is not stated.

Hang in there Kelsey... we have only begun this fight!