Symptoms For 2 Years, No Diagnosis

Posted , 6 users are following.

Hi everyone,

I've had strange symptoms for 2 years and have been to a multitude of doctors. None have found anything wrong in my blood work, MRI, etc. It started about 2 years ago as itching on my forehead. This itching eventually spread to all parts of my body and evolved into random pin prick sensations. In addition, I've been fatigued and had just random pains in my body. I commonly have sharp lightening pains in my chest that might be associated with cartilage inflammation in my chest. I also have constant muscle twitches in every muscle in my body including the muscles in my abdomen. The reason I am making this post now is because the past 3 days I've seen to have a bad "attack" where my symptoms have resurfaced along with extreme fatigue. The worst symptom is I'm having neck pain deep inside the back of my neck almost like my immune system is attacking it. I'm feeling a burning pain and my head feels heavy. Every once in a while, it will feel itchy inside. I also have had extreme dizziness since this has started This is the first time this has happened and it has scared me. Has anyone experienced anything like this? Any advice? I know I could go back to the doctor, but at this point I've lost hope.

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  • Posted

    A lot of people including doctors don't know exactly what causes itching. The good news is more of my contact with doctors and nurse practitioners has been positive because I feel heard. With drugs for IBS also working on psoriasis it shows a correlation with the gut and skin. 

    When the bacteria is under control some of the inflammation gets lessened. Inflammation that causes numerous gut issues which in turn can cause dizziness and migraine and I even had veins popping all over. 

    Pay attention to your diet. For me fiber was the worst cause of every issue. I eliminated everything but rice and butter with salt and some ground turkey no seasoning but butter and salt. After a few days I improved. I only added one food at a time. For me cooked was best. Nothing raw. 

    If you are inflamed you'll have fatigue too. When food proceeds through your digestive tract there are usually worse spots with damage. Years of inflammation can damage villi which can hinder motility. You might get constipated or diarrhea. If I get gas or diarrhea I itch horribly and when off antibiotics I can even blister. If I keep a limited diet I can work part time and I'm rarely dizzy. My skin is 95% better too. 

    My condition is considered auto immune now. Somewhat hereditary but worsened by diet and stress which can cause too much acid. I talk about acid on the abdominal site. 

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  • Posted

    Hi yes, I had all of these symptoms and developed more and I have an auto immune disorder. Very difficult sometimes to get a diagnosis. I would recommend if you have a good doctor ask directly for a referral to either an immunologist or a rheumatologist as these are the best docs to diagnose such a problem. I had years of going all round the houses and getting precisely nowhere very slowly. It changed when I saw an immunologist. 

    It might benefit you to have blood tests looking at esr crp and ana. They are not terribly specific but they can point to underlying auto immune disorders. Problem is they can be negative when you're actually positive. That's often the problem. Good luck. 

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    • Posted

      I've had an ANA twice now and it was negative. I've had an ESR and CRP run both once and they were also negative. My ESR was 0 mm, so it was really negative. I'm almost positive I have something autoimmune related, but none of the tests actually show it sad. I may request an ESR and CRP be run once more when I go back to the doctor. Would these tests be positive over a long period of time or would they only be positive if the blood was drawn when or shortly after there was an "attack" if the person seems to have a relapsing kind of disorder?

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    • Posted

      Hard to say. I know a lot of people who have negative results when really ill me included. I know of others feeling well and having positive results me included. I know of someone on here who was diagnosed with Sjogren's and never knew she had it. No symptoms but positive blood tests. These results are so unreliable which doesn't help you really does it. So elusive sometimes 😐

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  • Posted

    Hi,

    So sorry to hear about your pain. I have a few questions for you.

    Does your pain come and go? Does it move around to different joints in your body?

    Is the pain ever accompanied by redness or swelling?

    I posted here a few months ago because I suspected I had an autoimmune disease. I had a lot of shoulder/neck pain, but the pain moves around to different parts of my body. The symptoms come and go over weeks and months and all of my testing is negative, except that my ANA is 1:80.

    My doctor diagnosed me with a rare autoimmune disease called palindromic rheumatism (PR for short.) Basically, the absense of test results along with photos of my various ailments is what led to my diagnosis. If the above symptoms sound similar to you, I would suggest you do some research about Palindromic Rheumatism and ask your doctor for more information. It's rare, so even a lot of rheumatologists have not had much experience. I hope youre feeling better soon.

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    • Posted

      I also should have mentioned that many people with PR have muscle twitching (myself included) as well as all kinds of eczema. I have eczema on my forehead (between the eyebrows and on the forehead), as well as phompylox on my hands and feet. I think this is pretty common with autoimmune disease.
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