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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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@change25 have you had a paraneoplastic autoimmune antibody blood test done? I have had a lot of the same symptoms as you and everything was normal except for that panel. Its pretty rare but there is a place in England that knows about it. Am i correct in where you are? I'm sorry if not. Im juat learning how to navigate this site. The blood panel takes 28 days for the results to come back here from mayo clinic they made this panel I think and it's pretty crazy how it affects everything
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2 Reactions@change25 Is there a free hospital? or something named similar? I know a few people have gone there and gotten treatment and diagnoses for rare conditions. I am gonna look up a couple things I've stumbled on in my research that sounds like you and see if i can find it again
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1 ReactionCongratulations, @change25 . You are going in the right direction and @becsbuddy is so much help, isn't she? Helps me a lot as well. We really don't have to try to make all the choices/decisions, as we are not the experts. Our job, one of them, is to get ourselves to the best expert to help get us to the best expert! You've done that, sir. Then, we decide how to best apply his/her advice, directions.
Did you send your medical records to Mayo? I think you said you did send to the local hospital, but be sure to get all the info to Mayo. Also, when they accepted you as a patient, they sent you information about their procedures? Did they give you a schedule, or the name/specialty of the physician you'll be seeing first? That's the gatekeeper for you at that time, as this person will guide you to tests that will guide then to specialists who will help find your diagnosis and treatment, etc. If Mayo didn't tell you that, I'd call and ask who the doctor is they scheduled you with. Ask. I know, you're a strong, intelligent man and historically, I've found strong, intelligent men often won't ask for help, but you seem stronger and do....so just ask Mayo.
So, probably your first doctor will be an internist or maybe rheumatologist, Six weeks is a long time to wait as you continue to get worse, but it's also only 6 weeks. Did you let them know your situation, tell them your symptoms are worsening? You mentioned the supplements are helping. Might research proper amounts for best benefit w/o harming yourself. Just a thought.
I'm so pleased for you and your parents. I'm thrilled you have them for support. That's worth a fortune right there. Emotional and physical support - you're blessed to have them working with you.
Keep in touch. Blessings to you, your parents and may you get relief soon. elizabeth
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3 ReactionsThank you as always Becky. Agreed, but for whatever reason my gut is really swaying me towards that condition. I'm not ruling anything out though. Yeah, I'm not sure if it works differently to your clinics but when speaking to the Booker they advised me to get as much medical information as I could before seeing a consultant. Private consultations near me are relatively cheap so it makes sense to see a few specialists before heading down.
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2 ReactionsNo problem, not that I'm aware of. Yes, I'm from England. We have the NHS which is free, although it would be extremely unlikely and difficult to get refferd for such a test. Is it treatable and has your health improved?
Absolutely! She's a gem as are you Elizabeth.
Well that's the thing, I'm not sure if they operate differently over here but when initially speaking with the Booker they emphasised the importance of having as much information as possible prior to arriving.
They did yes, it just states that he's a physician with a focus in general medicine.
The last few days have been better. I can't recall anything I've done differently. Perhaps my vitamins and minerals are getting into a normal range.
For sure, I'm extremely blessed in that sense.
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2 Reactions@change25 there's information about it on the mayo clinic site. I don't want to try and explain and not get it right. I have not gotten treatment yet the doctors here don't know much about the antibody that i have so I am trying to get seen or a consult with mayo. And you would know if they ordered a paraneoplastic antibody panel. It might be worth mentioning. Good luck with everything.
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3 ReactionsNo worries. I'll look into it, cheers. That seems to be the issue. As most research and funding will of course go to illnesses with greater incidences. So when dealing with rare diseases few facilities have the means of diagnosing and treating your condition. With that said there's always hope, you're on your way so all the best and I'm sure you'll have what you need in no time.
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3 ReactionsSo glad you’re on a good path to figuring out a solution! I’ve found that looking at one potential diagnosis often leads to others, and of course loads of questions to ask your providers. I’m sure you’ve visited NORD - https://rarediseases.org/rare-diseases/parry-romberg-syndrome/. I’ve found it helpful. Another is Uptodate.com, it requires a subscription, but does have a lot of free info and references. At least seeing specialists leads to more labs and hopefully a diagnosis!
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3 ReactionsAbsolutely, my gut is normally pretty accurate and when I saw PRS something clicked. There's too many coincidences, where I have at least 6/7 of the symptoms. I'm not saying for certain that it is that but I'm fairly positive it is related to it. As I say my general health has improved recently it's just my stomach and from my neck up where the problem persists. So there are some positive though the headaches have worsened. If only I could get down to mayo sooner.
Oh well - not to worry I'm on my way. Hope you are well.
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