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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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Wonderful! That was really fast, but I expect that from this crowd!
What specialty? Consultant? Rheumatology, neurology, internist?
I suggest you just be clear about what's been happening, using a lot you've learned from this group. Hopefully, you're keeping a journal and writing down your progression of symptoms, timeframe of development of symptoms, maybe go back and re-read your messaging on this group to get specifics you may have forgotten. Also, you've taken care of your medical records getting to them?
You are on your way. My experience is Mayo is quite helpful financially, especially if you have some real issues that need their help, which you do, of course. This is great! I'm very pleased for you.
Blessings, elizabeth
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4 ReactionsI was shocked to see a reply after opening my email. Very quick indeed...It doesn't state their speciality just that they're a physician with a focus in general medicine.
At the moment that seems to be the issue. Where my medical files reveal very little. That's where I'm a bit apprehensive as the cost will quickly climb if multiple tests are needed. After I've recieved this phone call I should have a better perspective of what they can offer.
That's a good point, I'll look back at previous posts to see if I've missed anything out of my logs.
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4 ReactionsExciting news! I’m sure you’ve done this…remember to make a list of questions to have in front of you. Also, see if you can send your symptoms list and timeline to the provider in advance. My best wishes!
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3 ReactionsYea!! That’s so wonderful that Mayo contacted you! Don’t worry about what to specifically request. Just have as much information from your notebook/journal describing what has happened. Be ready to take notes! the bookers who call you
are also experts, so let them ask the questions. But do have a list of questions, just in case. I’m so excited for you.
Sorry I’ve been out of touch for a few days. As soon as it was safe, I flew east to see my elderly mother.
Keep us informed!
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5 ReactionsThat's lovely, I hope you had a nice time.
I spoke with one of their bookers yesterday, the cost was very reasonable. I wasn't pressured into booking anything and they've provided me with a link with all the information I need.
I'll give my local hospital a few more weeks to respond. I think the more information I can recieve the better my experience at mayo will be.
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5 ReactionsMaybe tell the local hospital that you have an ‘upcoming’ appointment with Mayo Clinic and they’ll speed things up!
Can someone go with you as a second set of ears and note taker?
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4 ReactionsThat's a good idea!
Yeah, either one of my parents or a friend will tag along.
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3 ReactionsHello @change25
If a parent or friend can tag along, ask them to be your note taker. Often at appointments, it will be hard to pick up on every suggestion or thought that the doctor makes. Having a note taker can be very helpful. Looking forward to hearing from you whenever you schedule a Mayo appointment!
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5 ReactionsAfter a lengthy discussion my parents and I have agreed that going with mayo is the best move. However, with their current availability and my ability of getting there, the earliest possible appointment is looking like 6 weeks away. In the meantime... my parents have kindly agreed that I can get some private consultations nearby. My gut is telling me that it is more than likely parry romberg; where it is fairly tricky to diagnose. What specialist would be best: Rhumatologist, neurologist, dermatologist or something else? I think it is in my best interest to gather as much information as possible. That way when I get to mayo they'll have a better understanding of what's happening.
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3 ReactionsI’m glad you’ve discussed all of this with your parents. Parents can be of great help!
Don’t set your sights solely on Parry Romberg Syndrome. It usually starts in young children. The link I entered is about adult onset (which is rare in an already rare disease).
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6374961/#sec1title
When you mention Mayo Clinic, are you referring to the affiliate in London? That would be your best bet. As for specialty, let the hospital decide. Have you sent medical records to a hospital? Did they include photos of your face?
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