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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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I understand how you feel. We went to the mayo in Minnesota in THE WINTER where it didnt go above 35 below zero. We drove from long Island NY in snow,ice to get to our appts. After seeing a nephrologist, my 22 yr old son has chronic kidney disease, I found out they were.no better than any hospital. Appts were made 1 a day,so we had all day to do nothing after the appt. Why couldnt they schedule multiple appts??? Who knows.We never had 1 Dr call us back for another after blood work was done.I had to find out the results off the patient portal ,Im an RN and can read them but I AM NOT A DR. One reason was we wanted to see a dietician, THAT NEVER HAPPENED!! It was an absolute wast of time and the Hotel connected to the hospital was filthy. My advice keep looking for a new Dr,there has to be someone out there that still care.We just went to a " new" nephrologist,another wast of time. Ive come to the conclusion that they have no idea what is new,since I know more about it at this point.Dont give up,Its your life,to them we are just a chart number. 🙏you find the help you need.
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2 ReactionsYeah that's no good at all, you're going out of your way concerned and confused willing to do anything and they aren't accommodating which is the least they should do. How's your son doing now? Did he require a kidney transplant or was it controlled?
I'm resting on these last tests to reveal something, I did see a connective tissue specialist recently and they were fairly convinced I have pheochromocytoma my GP wants to double check. I'll never give up you just reach a point where you are existing rather than living. I'm sure I'll have some answers soon.
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1 Reaction@change25 ... I am not surprised at all. I was told for three quarters of a century that there was nothing wrong with me, except that I had some psycho problems. Well, I know I had psycho problems. I just call these psycho problems my lazy doctors. Then I started digging into my genetics. Now, after the testing, I know that I have a pot full of diseases, mostly cancers, urinary and blood and nerve diseases. I have have the genetics for many forms of cancer, from Bladder to Lung to skin to brain cancers of different types. Medicos have remove about half my guts now, along with some stuff they cannot remove. And I am left with the remains of 53 cancer surgeries, mostly Heart, lung, bone, blood, brain, and facial skin. Melanoma, carcinoma, papillary, basal cell, etc. My suggestion? Demand a Whole Genome Analysis genetically. And if you cannot do that for some reason, at least get the mini-exome analysis. Then get Sequencing.com to run it through their processes in their Genome Explorer. For the price of a tank of petrol you should get a good start on what you need to know. And look at every hit on your analysis. You will end up with a few thousand hints as to what is wrong. THEN if you don't get some clues, it is your own fault that you did not do all the work. I ended up with about 200 pathogenic and another couple thousand possibilities oldkarl
I hope sharing my experience will help you deal with the ambiguity, uncertainty, stress, and frustration. I have an excellent neurologist who helped me understand the process of diagnosis. I learned that the diagnosis itself is based on the patient’s description of symptoms followed by testing to verify the doctor’s “best guess” of the cause of those symptoms. When the formal medical diagnosis is made, therapy and medications are prescribed and insurance policies are activated. The reason for delay in diagnosis is that the doc needs to be certain the patient is taking the right medication because only then can the true cause of symptoms be addressed. All medications have side effects, some very serious. The patient shouldn’t have to suffer side effects from taking a drug that doesn’t address the actual problem. Doing so leaves the real problem untreated and just confuses the entire situation. That’s how my local neurologist explained things to me. He then referred me to a specialist at Barnes Jewish Hospital in St Louis. I was diagnosed that same day and started medication the next day.
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2 Reactions@sueatt it is true that the weather in the winter is cold... there is no getting around that outside of using the subway and skyway systems and dressing warm. As a born and raised Minnesotan, I still really appreciate the indoor access.
As for the appointments and your overall experience not being what you had expected, I would encourage you to reach out to The Office of Patient Experience with your concerns.
Office of Patient Experience
Mayo Building, lobby level
8 a.m. to 5 p.m., Monday–Friday
507-284-4988
Staff are available to discuss comments or concerns you may have regarding your medical care at Mayo Clinic.
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3 ReactionsUnfortunately the partial sequencing I had didn't flag anything. It is possible to get more sophisticated sequencing with my healthcare provider so when I next see my GP I may see if he's willing to explore this. It is crazy to think you went so long with such serious diseases yet you were unable to reach a diagnosis at the time. Were they conducting the wrong tests or were the symptoms of the disease not present at the time? Awful that you felt like you did for so long, hopefully you have a treatment plan to manage your symptoms now.
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1 Reaction@change25, I’m very sorry for your ongoing suffering and medical battles. For more than a decade I reported various symptoms to my general practitioners, which were ignored. By the time the one autoimmune disease was diagnosed, I had stage 3 liver disease, which led to a liver transplant and now the other has resulted in constant pain and peripheral neuropathy.
Sadly, you’re in a lot of company when it comes to doctors who don’t want to explore out of the “norm” of cancer, heart disease, etc. and truly help to find diagnosis for the rest of us so that we can avoid years of physical and mental anguish. I know there are providers out there that do think out of the box. May you fine one soon!
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3 ReactionsExactly which isn't right, you did the right thing and either due to negligence or laziness they weren't willing to do the leg work which would've resulted in a much better prognosis for you. There's certain things Dr's are brilliant at but when it's rare or unusual most seem to falter.
I did see a really good connective tissue specialist and they sent a letter to my Dr and based on my symptoms they are fairly adamant that the cause of my problems is pheochromocytoma. My GP has followed this up so now it's just another waiting game. Still can't comprehend how a neurologist can comment saying severe ongoing headaches and facial pain is normal if that's their mindset I'm glad they've released me anyway.
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2 Reactions@athenalee.. Your story could be mine, except that my chronic liver disease has now progressed into stage 4, and the total of my cancer surgeries and procedures is now 53. Probably hit 54 this week. oldkarl
Hang in there @change and be strong…and, remember to keep being the “squeaky wheel!” I’m glad you’ve found at least a couple provider advocates for you.
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