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At a loss, multiple consultations still no answer...any idea?
In the last year my health has rapidly declined, I've recently had a blood test which was normal except for my folate which was low. My Dr conducted an examination, but was unable to properly diagnose me.
Any idea what it may be from these symptoms:
*Pulsating headache, difficulty focusing.
*Weak eyes where they feel droopy along with being dry and painful.
*Dry and sore mouth.
*cheek and jaw pain.
*Changes in pigmentation, face appears gaunt.
*Back pain.
*Odd tingling sensation present in hands and feet.
*cold hands along with an odd rash present on hands and knuckles, which is a deep purple.
I know something isn't right, yet I'm unable to obtain the answers I need. I've added some images before the changes occurred to now so that you can get a context into what's occurred. Any insight will be greatly appreciated, many thanks.
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Blood tests will give the doc and you whatever information the doctor requests. If he includes things like Sed Rate or other specific tests for autoimmune diseases and tests for various vitamin deficiencies, you may well get somewhere. But, it can also be spinning wheels. What was his reason for not referring you to a specialist? Does he discount what you're telling him or do you know his thinking? Does he have a theory as to what's happening?
Perhaps if you mention your thoughts about autoimmune disorders or vit deficiency he will begin thinking in that direction. At least, ask him to order the more specific testing to ck it out. He may learn something in the process.
Then, a second request for referral is in order.
Does your insurance require a referral to a specialist to cover it? Sometimes we can make appts on our own, depending on the coverage. I'm able to do that, in fact that's how I got to Mayo neurology. I called and explained my situation and got an appointment.
I hope this works for you and he adds some tests. It's interesting how we have to help our doctors, especially if they're not extremely inquisitive. your situation can be too big a challenge for some, but you may be able to get him to work with you on this.....Go for it and do well. You are in control of your life, even tho it may seem out of control at this time. We have to advocate for ourselves, and I found with some of the wonky disorders and diseases, especially autoimmune, doctors can be overwhelmed....too many unknowns. So, you lead him to help you get answers from bloodwork or help you find answers from others. Bless you on this journey. You will find answers! elizabeth
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3 ReactionsI have an autoimmune disease, and it took 2 years to diagnose it. The antibody tests came back inconclusive that long, and we didn't suspect it at first. At least for my autoimmune disease, myasthenia gravis, it can take 2 years to figure out what it is. don't give up, make an appointment.
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4 ReactionsHe didn't discuss what the specific tests would be for, just that I'd need to have further blood tests. I've got the blood test form which is requesting the following: Blood film, ESR, Full blood count, creatine kinase, CRP, Liver, TSH, 25-hydroxy vitamin D, Anti nuclear antibody and IgG A M & Electrophoresis.
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2 ReactionsI'm not sure to be honest. He seems like he genuinely cares and is willing to listen. I can only assume he's not dealt with a case such as this before as he seems young. Hopefully, these tests reveal something and if not he'll pass me onto someone else. I was meaning to mention that I believed it could well be an autoimmune disease but then I recalled how doctors have reacted in the past and instead remained quiet. Unfortunately, my insurance requires a referral. I'll keep pushing for answers and if nothing happens after these tests I'll be much more direct.
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2 ReactionsThat must've been frustrating to say the least. Has your treatment since diagnosis alleviated your symptoms?
You answered John and my concerns. He's on the right track....listen to me, as if I know what to do! He added some important test, the anitbody test and CRP are both autoimmune specific. You mentioned he's young. That may be good and this looks like it might give you some answers. I have a good feeling about this, that you're on your way.
Blessings, elizabeth
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2 ReactionsThank you for the reassurance, that's good to know. It would seem that he did take on board what was discussed then.
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3 ReactionsBelow is a list of the labs I had recently. It confirmed what my neurologist suspected, another autoimmune disease that is most likely causing my neuropathy and other symptoms. I am still being sent to a hematologist, as there were results that he couldn’t diagnose. As others have commented, labs are a positive step. These can at least point the way to specialists you should see.
Immunofixation FAH (Immunotyping, Serum)
Ab to Extractable Nuclear Ag (Extractable Nuclear)
Centromere Abs, IgG
Electrophoresis, Serum Protein
Folate (Folic Acid) serum
Hemoglobin A1c DC (HgbA1c)
Homocysteine, Total P
Methylmalonic Acid, Quant
Vitamin B12 Level 1 (B12 Level 1)
dsDNA Abs, IgG
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3 ReactionsThat's good to know, thanks for the info. I'm going in for my bloods this weekend, I suspect that the results will come back around the middle of next week. I'll post an update once I've recieved them.
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3 ReactionsOmg, I have all those things. My primary is on maternity leave till August and the ass taking over that has a god complex won’t give me blood test or referral to rheumatologist She actually said my dr is better than her. Why would u trust her after that? I’ve given up on western meds for now and western doctors. Enough is enough. Look up. Church of Mother Earth. Soul quest in Orlando. I’m going on june
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