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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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Hello @one00100, You should receive another email notification where I welcomed you to a small fiber neuropathy discussion. Here's the discussion if you want to jump to it now - https://connect.mayoclinic.org/comment/636941/
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1 ReactionI've not heard of that before, I'm not sure if it's standard practice in the UK. They do have access to some results but when you're referred to a specialist it's is normally separate until they release you back to your GP.
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1 Reaction@change25, @becsbuddy and all....
Glad you got through the MRI ok. Fun, eh? A very valuable tool for the medical community. I've learned after testing, a phone call from one of the medical staff or physicians comes soon after the results are known and something unexpected or unusual is found. If the results are normal, I've always gotten a letter within a couple of days and /or nofication via portal. No one does a portal like Mayo, but if an issue is found, you are notified in person. Also, the staff may call to schedule an on-site appt.
I am very persistent now. I believe the pictures, etc from MRI and other tests, are my body and therefore the reports belong to me. I'm a bit pushy now, and live in Florida, The UK has quite different procedures and laws, but I do think it is important for you to follow-up.
You said the hospital said they will send the reports to you GP, right? Suggestion: go to the hospital, to the records department, maybe call first and request copies of your hospital records. You pick them up when ready, in person. I do this every time I'm hospitalized....prior to Mayo Hospital as I only go to Mayo, so they have all my records and only see Mayo docs. But, it is important for you to keep a cc of your medical records at home for when you need them. It's also a good thing for you to read them and understand what's happening in your body.
You are in control of your body and your care! So, take cc of records to your GP or have them delivered to him from hospital....be sure they tell you when the records will be sent. Let them know it's important to get them out asap. Then, contact the GP and see what he can tell you. He may be able to let you at least generalities and then you get the nittty-gritty from the specialist. Also, the GP may be able to get you in to speak with the neurologist sooner if he thinks it will help.
I just know you can do things to get answers. Getting the records is important. Go from there and see what you can find out, but 7 weeks is ridiculous in my opinion. And, that's one reason I no longer see any doctors in town other than Mayo docs. Mayo incudes the patient in the care. No secrets, at least I haven't had that issue yet. And, discussions are up front and honest. I ask 'to the point' questions so the docs can't avoid telling me the facts. I also use the internet carefully, but often to learn as much as possible about the tests, results and such. Fewer questions in this head of mine and that's helpful.
Blessings my UK friend. Do your work, be diligent and determined. You have done such a wonderful job taking control of your situation. AND, be sure to do something important for yourself today and every day. I mean, get some ice cream, or stop at the coffee house for a latte, or get a new shirt or whatever will make you happy. You're special. Be special to yourself. elizabeth
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2 ReactionsFantastic advice as always, thank you Elizabeth. I hope you and your son are well.
That's the thing, I did receive a letter shortly after my MRI. However, with the neurology department being so small I thought it was odd that they'd schedule an appointment as when nothing is found they'll release you back to your GP. So I called the hospital and discovered what I did.
It's not unusual to wait such lengthy periods, my friend was recently diagnosed with MS and he waited 8 weeks for his first follow up and another 34 months after his initial MRI until he was officially diagnosed. Unless it is life threatening they aren't quick to act and unfortunately the current situation has only worsened this.
I think it's time to head down to mayo, I'll get the results from the hospital this week and schedule and initial consultation to get the wheels in motion, all the best.
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1 ReactionFunny, i get up, do stretches, some qigong, and walk 2 miles, come back and make a protein drink, with cocoa nibs and non dairy milk. I have fruit with nuts, chia and ground flax seeds, and a little muesli for breakfast. Hadn’t heard of taking creatine before, so thanks, I’ll check it out.
SS has the oddest symptoms, I’ve had a sore throat and in the back of my mouth and jaw since May. It’s impossible to get to see an ear, nose, throat specialist. So, my primary has put me on antibiotics, nystatin, and Pantoprazole, but nothing has helped. I’ve had oral thrush, so I’m thinking it’s that.
I’m going to ask the neuromuscular doctor about PT for my sore back muscles. I hope you find a chiropractor helps your neck, jaw, and ears…do you think it’s muscular or a nerve issues? Have you had your parotid glands checked?
Stay positive!
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1 ReactionYes, SS symptoms can be all over the place. I’ve had hypersalivation at times along with dry mouth! Lately I’ve had a crazy super sweating problem with the heat but not always and I used to never hardly perspire but now take electrolytes when outdoors or I become exhausted from dehydration. I had my parotid glands checked about 20 yrs. ago because they would become swollen but that stopped after about a year and I haven’t had them checked since. I have TMJ which I’m not sure if it’s effecting my ears, so many dumb things but I do stay positive because things can always be worse. The creatine I started taking to try and gain back muscle mass and weight which I lost in the past 2 yrs., it is supposedly helpful when combined with exercise.
@athenalee. Hi Athena. So very glad you stuck to your guns and were such a good advocate for yourself! Seeing a neurologist and a neuromuscular doctor would be so important for your conditions. Way to go!
I've been self-advocating too, on behalf of my IBS and daily longterm diarrhea. I've been imploring my doctor for months to stop a certain daily rapid motility prescription medication (Constella) which I took together with Lax-a-Day and Metamucil every morning. I was SURE it was the cause of the daily, very weakening diarrhea. She finally agreed to stop the RX, and lo and behold, no diarrhea ever since! However, she did start me on Dicetel after a three-day wait. I took the first pill as directed, with a full glass of water and with food. Within 3 hours I was throwing up violently many times. with a scarey show of blood at about the 4th time. My Care Aid stayed with me for a while but once she had to leave for her other duties, even more violent upchucking ensued. She summoned the nurse, who said if it continued, I needed to go by ambulance to the hospital E.R. It started again with a vengeance and an ambulance took me to the hospital, completely dehydrated and still extremely nauseated. Lab work, x-rays I.V. fluids as well as anti-nausea I.V.s x 2.
Finally sent home by ambulance at 2:30 a.m.!
And folks, I'm not saying either of these meds would be bad for YOU. I'm just extremely sensitive to prescription meds and this is solely my own reaction. Feeling better now, but still weak and wimpy. Determined to get my stamina back and be outdoors walking my mile some day soon! Laurie
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2 ReactionsOh, Laurie, @artist01. This is just awful! I’m so glad your health aide was there to help you! When will medicines ever learn to just be nice to us and just do their job! Stay in bed today, please
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2 Reactions@becsbuddy Hahaha, Becky. Stay in bed? What's that? Ya' can't keep me down, girl!!
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1 ReactionOh Laurie, your strength snd positivity in adversity is amazing. I can’t believe all your struggle with IBS and ongoing diarrhea was due to your meds! And, then the doctor gives you another med that makes you vomit! Perhaps a natural approach for IBS could be possible?
I’m glad you’re feeling a little better. Please rest to regain your strength and continue to improve! I’ve refused to take medications in the past, at least until my provider explained the necessity, side effects, and alternatives. Remember, it’s your body and you know it best. Our doctors may be experts, but they’re certainly not infallible, as we both well know! So, it’s your right to question and discuss all treatment options.
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