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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He 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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1 ReactionI have no problems speaking up for myself and I think that sometimes bad doctors are threatened by that so this one has a God complex I put in a call to every patient advocate supervisor this b#%$h isn’t getting away with this I am in control of my life no one else
@athenalee I thing I will say this until its the only thing I can remember. It is this: Get a "Whole Genome 30x" analysis from a legitimate genetics lab such as Living DNA, Sequencing.com, Apollo, etc. Then have your doc or geneticist look to compare the reports with your symptoms and signs. Here is the point: If you or your doc think you have something that MIGHT be the result of a genetic defect or situation, look through the genes, probably with Genome Explorer or similar. If you do not have the gene or syndrome or variant for that particular symptom or sign, you are 99 44/100% certain you do not have that. But if you find even 1 or 2 mentions in your genome, it is worth checking further. If you find 5 or more, you had better look more carefully. The internet is filled with resources for this study. Human Phenotype Ontology; Online Mendelian Inheritance in Man; NORD; NCBI; etc etc. At this point, it looks as if your best bet is a good whole genome analysis and a strong geneticist or genetics firm such as Sequencing, Nebula, etc.
Genetics Disorders Proven (Genetics-Disorders-Proven-Master.pdf)
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