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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 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
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1 ReactionSjogrens 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.
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2 ReactionsI'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.
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1 ReactionIt 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.
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2 ReactionsI'm new to this forum but I just wanted you to know that I was asked if I HAD all the symptoms that you are having. I had no symptoms at all. I had an MRI of my head and neck for an unrelated problem. The next day my neurologist called to tell me that she had already made an appt for me the next day with a neurosurgeon. My third consult was at Vanderbilt Univ. When the neurosurgeon put my MRI on the screen I easily pointed to my problem. I had severe cervical stenosis and myelopathy but had no symptoms. Without any treatment I would eventually be paralyzed from the neck down. It was just a matter of time and/or injury, such as a MVA or fall. I had a laminectomy with hardware (2 rods and 8 screws) of C 3-6. I was very lucky that my problem was found before something catastrophic happened. You must appeal BC/BS until you get your MRI. You have all the symptoms that I should have had. Good luck and I hope you get a diagnosis. Chris
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2 ReactionsI do not know why my two neurologists have not said much about the MRI I did have on my cervical spine and even the neuro surgeon who reviewed the MRI said surgery would be last option and I should do PT on the neck first and if I get to a point I feel symptoms are something I'm not willing to live with then he would discuss surgery. This Neuro surgeon on Augusta GA felt surgery is last option if PT on neck does not work.
So I start PT on neck next week.
So discouraging and scary to see so many different type doctors either NOT be concerned or this Neuro surgeon felt surgery is final option.
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1 ReactionHi @change25 , I can't stand waiting, especially for a mystery abnormality!
I would contact someone, one of them, and plead my case!
It seems cruel to say there's an abnormality and then make you wait!
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3 ReactionsAbsolutely, I appreciate that there's protocols in place and an ongoing backlog but is seems unnecessary and cruel to wait that long. I'll definitely pursue it, I no longer care in fairness.
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3 ReactionsYou can have Sjogren’s and may not be positive on the blood work. As @helennicola noted there are various tests for Sjogren’s and many systemic symptoms. My Sjogren’s first manifested extraglandular…tremors, peripheral neuropathy in all extremities, and moderate to severe muscle and joint pain.
Hopefully blood labs can rule out what you don’t have. Keep pursuing answers, more labs, tests, and request referrals to different doctors if you’re not satisfied . I’m still searching for a competent rheumatologist who will provide treatment. I do have a good neurologist.
If you’re interested, here’s two excellent websites I’ve found helpful:
https://www.smartpatients.com/
https://www.sjogrensadvocate.com/
Best wishes on finding answers and solutions!
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1 ReactionHang in there. The medical specialist world seems to be slow, cumbersome, confusing, and often very impersonal.
I’m glad you are getting referred to PT! I’m hopeful for positive results!
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