At a loss, multiple consultations still no answer...any idea?

Posted by change25 @change25, Apr 24, 2021

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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@joannemm30809

I saw my gastro doctor today and she agrees with all my multitude of symptoms for almost 2 years now November 2019 that she agrees with my cardiologist from 2 years ago and my primary care doctor that all my symptoms are pointing to an autonomic nervous system malfunction. So my family doctor's going to try to get me referred and my insurance to approve it to go to the Mayo clinic in Jacksonville since we hear they are pretty up on autonomic nervous system issues. My question is if autonomic nervous system issues only pertain to dysautonomia And I reviewed the 15 categories of dysautonomia yet I don't see how I can fit into any one of those 15 categories unless you can have autonomic nervous system problems without ever having to be put into one of those 15 categories.

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@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?

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@joannemm30809

The only medication I'm taking is metoprolol and it's 25 mg in the morning and 25 mg in the evening.

I'm very hesitant on getting any pharmaceutical antidepressants or anxiety. I need to find out why I have all these persistent progressively getting worse neurological symptoms that have no rhyme no reason and have no trigger for them just occurring out of the blue everyday.

The doctor never prescribed any nerve medication for everything including my muscle twitches throughout my body He just said it's benign fasciculation syndrome and I need to go get a hobby or go do yoga or go learn meditation etc but he said it's benign and I just need to learn to live with all the muscle twitching so I have no medicine for that either.

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@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.

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@jwillits8

@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.

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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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@suzetteirons

Hello i am having pain all over my body and my primary care doctor said they couldn’t do nothing more for me because they can’t fine what is the cause of my pains and they wanted me to see a specialist that’s when I see the first Rheumatolgist and she told me I have Sjögren’s and she just base her diagnoses off the fact that I am having dry mouth and dry eyes. I was giving all these meds that did not help with the pains, I ask her to do these test that will give me a sure answer to say I have Sjögren’s but she refuse to do it so I seek a second opinion and that’s when the next doctor did blood test and it show in his blood work that I don’t have Sjögren’s or lupus but he said I have a lot of inflammation in my body and it could range from a cold to cancer and 300 other things in between and I have been having these pains for about 5 year with no help in site, that’s when My cousin told me to join this group because I can fine people on here that is going through the same thing as me or similar thing.

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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.

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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.

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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.

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@joannemm30809

I have persistent and worsening pins, needles, numbness, paralysis in all parts of my body, including my face and it's worsened over past 1.5 years.

Had MRI on neck two years ago and it showed cervical stenosis and calcification and narrowing of spinal fluid canals on both sides of vertebrae with myelopathy.

Since then my feet, calves, hands, arms, mid back, belly and lower face go numb. Pins, needles. Etc

My insurance company BCBS has denied three times for MRI of spine or brain. They state I need to go through PT first on my back before MRI is approved.

That seems backwards to me. Why would you to PT on the spine when you have no x-rays to show possible spinal cord impingement etc??

I am at a loss. Could Mylopathy of my neck with stenosis and narrowing of spinal fluid in neck cause all these symptoms etc?

All specialist are at a loss. I've had tons of tests and blood work but never MRI on back.

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I'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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@varken51

I'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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I 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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@change25

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.

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Hi @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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@yellowdoggirl

Hi @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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Absolutely, 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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@suzetteirons

Hello i am having pain all over my body and my primary care doctor said they couldn’t do nothing more for me because they can’t fine what is the cause of my pains and they wanted me to see a specialist that’s when I see the first Rheumatolgist and she told me I have Sjögren’s and she just base her diagnoses off the fact that I am having dry mouth and dry eyes. I was giving all these meds that did not help with the pains, I ask her to do these test that will give me a sure answer to say I have Sjögren’s but she refuse to do it so I seek a second opinion and that’s when the next doctor did blood test and it show in his blood work that I don’t have Sjögren’s or lupus but he said I have a lot of inflammation in my body and it could range from a cold to cancer and 300 other things in between and I have been having these pains for about 5 year with no help in site, that’s when My cousin told me to join this group because I can fine people on here that is going through the same thing as me or similar thing.

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You 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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@joannemm30809

I 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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Hang 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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