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’m very sorry that you’re battling both your health and your insurance. Our country’s medical insurance, or often lack there of, is woefully unjust and unequal. I had fabulous insurance when I was employed, but lost it when I had to resign as I got too ill to work. Have been only doing contract work since and now on Medicaid, which many doctors do not accept and you don’t get approved for a lot tests and procedures.
As a patient, I do not have much advice to offer for your health issues, other than to try to remain positive and keep pushing your providers for answers. Doctors can often switch up orders for tests so that insurance providers will approve them So, I’d recommend you keep pursuing the MRI. An MRI is often key to ruling out what is or isn’t the cause of one’s neuropathy.
Have you had the gamut of blood labs to also try to diagnose what you may have? Also, have you sent in an appeal to BCBS? I did that twice, wrote up all my issues, why I needed the procedure, stated that my doctor says I need the procedure, I couldn’t afford it, etc., and I won.
I hope you find answers soon.
I have had just about every bit of blood test done and many other tests and x-rays yet all negative except two years ago a MRI of my neck showed cervical stenosis with herniation and myelopathy as well as narrowing of spinal fluid on both sides of vertebrates in heck.
Good news just received Tonight!! My primary care doctor appealed to BCBS and won for MRIs on spine and neck. This was after three denials of these MRIs. My doctor is going to refer me to Mayo so hopefully they are willing to help me get a diagnosis.
I'm starting to believe it is autonomic nervous system disease. Horrible. These symptoms are relentless and scary.
I’m glad you’re getting the MRIs, they offer hope in finding suitable treatment. Please let us know what your providers find.
I will. It's been two years of suffering with no accurate diagnosis or treatment plan. I hope these MRIs or Mayo bring me some answers and some hope for me to live a somewhat normal life.
@joannemm30809 I’m very glad your doctors are working together (or at least thinking alike). You have remained very steadfast throughout and i admire you. Now, you should take time to put all your symptoms in writing, with a timeline, if possible. @athenalee has been giving you some great advice! And don’t worry about fitting/not fitting into 1 of the 15 categories! We’ll all keep you in our thoughts
Is there anything we can do for you right now besides keeping our fingers crossed?
@joannemm30809
Hi. I’m Joann and I was in metropolol for a short time. I started having all kinds of Neuro symptoms including trouble walking. A doctor told me metropolol can cause these problems. I’ve heard from several people taking metropolol that they are concerned with the drug.
I had to have physical therapy a few times to get back to walking again.
I am going to my cardio doctor next week to discuss this matter.
Do you have a link I can read and bring with me so I'm prepared to explain this matter to my doctor?
Also I have a Loop recorder in my left chest for three years now and I was wondering if that too could be causing a neurological problem.
Anyone who has info on long-term Neuro and health issues with metaprolol please send me that info! Thank you so much! @jwillits8
Sjogrens can be present without a definite positive diagnosis after labs. Sjogrens can present in a multitude of symptoms not just dryness. There are many Facebook forum groups you may join if you want to become more familiar. It’s crazy but most often a formal diagnosis of Sjögren’s takes years to be verified. You could also Google it to see if your symptoms are mentioned. I would also consider a chiropractor or acupuncturist along with or instead of P/T.
I'm not pleased. The radiologist said I would receive my MRI results within 3 weeks. A letter arrived this morning from the neurologist that booked the test stating that a phone call has been booked with him on the 8th November. This is over 7 weeks away which seems absurd given the anxiety experienced when waiting for results. I can only assume the MRI is clear but why they can't mention that on the letter is beyond me...frustrating times.
It turns out I was wrong. I contacted the hospital that conducted the test, they have the report but can't release the information as it has to be done by the neurologist that requested the test.
The reason for the delay is that an abnormality was found but the neurologist who requested the test doesn't deal with that issue so I've been refferd to someone else.
Sometimes GP's are sent a copy with a brief summary so hopefully that's the case as I really don't think I can endure waiting 7 weeks.