1. < Autoimmune Diseases

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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change25 | @change25 | Sep 18, 2021
In reply to @becsbuddy "Good morning @change25 . The news you received really isn’t the news anyone wants to get...." + (show)
@becsbuddy

Good morning @change25 . The news you received really isn’t the news anyone wants to get. I applaud you for calling the hospital so that you know that your report is in someone’s hands. Not a great report but at least you’re moving forward. Do you know the name of the neurologist that you’ve been referred to? Think you could call his office, explain who you are, and ask for an appointment?

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Unfortunately not, it just has the name of the neurologist that requested the test. The number that was given is just a generic hospital number that deals with cancellations. My GP is calling me next week so I'll discuss my concerns with him to see what he suggests.

I'm not happy with how things are progressing. I'm tempted to see if I can get my MRI released and head down to Mayo earlier instead.

REPLY
2 replies
jwillits8 | @jwillits8 | Sep 18, 2021
In reply to @joannemm30809 "I am going to my cardio doctor next week to discuss this matter. Do you have..." + (show)
@joannemm30809

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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@joannemm30809
I don’t have a link. Does the loop recorder have wires that perhaps came loose? Don’t give up! Keep persevering! I know how hard it is myself.

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1 reply
joannemm34293 | @joannemm30809 | Sep 18, 2021
In reply to @jwillits8 "@joannemm30809 I don’t have a link. Does the loop recorder have wires that perhaps came loose?..." + (show)
@jwillits8

@joannemm30809
I don’t have a link. Does the loop recorder have wires that perhaps came loose? Don’t give up! Keep persevering! I know how hard it is myself.

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Loop recorder has no wires etc. It's just a tiny looking chip the size of half your pinky finger.

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athenalee | @athenalee | Sep 18, 2021
In reply to @helennicola "Glad you have a good neurologist, my neurolologist and rheumatologist both leave a lot to be..." + (show)
@helennicola

Glad you have a good neurologist, my neurolologist and rheumatologist both leave a lot to be desired! I often get tired of trying to figure things out and have come to all conclusions and self-treatment decisions for the past 3 yrs. Luckily I have managed to keep symptoms from progressing too much. Doctors either have inadequate knowledge of, or the time to treat, you must be willing to do your own research and be your own advocate these days.

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I agree…My neurologist warned me I might not even be seen by a rheumatologist! Sure enough, I get stuck with a PA who was completely unhelpful after two visits, so I canceled the third visit, asked to see a MD, and was refused. Very sad as I look at Mayo and John Hopkins and they have a webpage on Sjogren’s and do a team approach for treatment.

So, I found the Rheumatology Dept. Director at the only other big hospital in the region. I wrote her and her assistant got back to me the next day. Said to get a referral and they’d definitely see me. So, I I’ve got a request into my neurologist.

He also had referred me months ago to a neuromuscular doctor, who I finally get to see in two weeks, so I’m a little more hopeful!

I did start taking R-ALA/S-ALA, ALCAR, and complete Omegas, with GLA, and B vitamins. And, I take 300 mg Gabapentin at night to help me sleep.I also don’t do refined sugar, white flour, etc. and I walk a lot. My numbness has continued to worsen, as have my feet, hands, and muscles. But I don’t have the sharp nerve pains as much.

I’m glad your managing your symptoms somewhat. Perhaps I’ll have better results as I keep my self-treatment up longer. Anything else natural you’d recommend?

REPLY
2 replies
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Sep 18, 2021
In reply to @change25 "Unfortunately not, it just has the name of the neurologist that requested the test. The number..." + (show)
@change25

Unfortunately not, it just has the name of the neurologist that requested the test. The number that was given is just a generic hospital number that deals with cancellations. My GP is calling me next week so I'll discuss my concerns with him to see what he suggests.

I'm not happy with how things are progressing. I'm tempted to see if I can get my MRI released and head down to Mayo earlier instead.

Jump to this post

Waiting is not something I’m good at either! When you talk to your GP ask if the report shows something that needs urgent action- or there may be some abnormality that just happens to be found but may not affect your life now.
In that case it’s best to wait to see the neurologist to get a proper explanation.

REPLY
1 reply
helennicola | @helennicola | Sep 18, 2021
In reply to @athenalee "I agree…My neurologist warned me I might not even be seen by a rheumatologist! Sure enough,..." + (show)
@athenalee

I agree…My neurologist warned me I might not even be seen by a rheumatologist! Sure enough, I get stuck with a PA who was completely unhelpful after two visits, so I canceled the third visit, asked to see a MD, and was refused. Very sad as I look at Mayo and John Hopkins and they have a webpage on Sjogren’s and do a team approach for treatment.

So, I found the Rheumatology Dept. Director at the only other big hospital in the region. I wrote her and her assistant got back to me the next day. Said to get a referral and they’d definitely see me. So, I I’ve got a request into my neurologist.

He also had referred me months ago to a neuromuscular doctor, who I finally get to see in two weeks, so I’m a little more hopeful!

I did start taking R-ALA/S-ALA, ALCAR, and complete Omegas, with GLA, and B vitamins. And, I take 300 mg Gabapentin at night to help me sleep.I also don’t do refined sugar, white flour, etc. and I walk a lot. My numbness has continued to worsen, as have my feet, hands, and muscles. But I don’t have the sharp nerve pains as much.

I’m glad your managing your symptoms somewhat. Perhaps I’ll have better results as I keep my self-treatment up longer. Anything else natural you’d recommend?

Jump to this post

I’m so sorry to hear that most of your symptoms have worsened but glad your pain is less. I can only add, for what it’s worth, that I drink a smoothie each morning containing whey, creatine, 2-3 fruits, peanut butter, cocoa, protein drink, ground flaxseed and almond milk. I also take Vit. C, D, magnesium glycinate every day and B complex 1-2 x month. I walk plus use exercise equipment plus some lite yoga/stretching at home. I’d been seeing a P/T for my neck which has been bad lately and will probably see a chiropractor, also my ears/jaw have been sore/tight lately. I think it’s SS. also mindfulness, and prayer help me. I don’t see my rheumatologist again until Dec. but I’m going to look for another one beforehand. I do hope you get some answers and feel better soon.

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1 reply
change25 | @change25 | Sep 19, 2021
In reply to @astaingegerdm "Waiting is not something I’m good at either! When you talk to your GP ask if..." + (show)
@astaingegerdm

Waiting is not something I’m good at either! When you talk to your GP ask if the report shows something that needs urgent action- or there may be some abnormality that just happens to be found but may not affect your life now.
In that case it’s best to wait to see the neurologist to get a proper explanation.

Jump to this post

That's a good point, thank you. In all fairness my GP has been pretty good so I'm sure he'll advise me on what I should do next. Normally there's a 1-2 week turnaround if something serious is detected. Therefore, whatever has been shown poses no immediate threat.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Sep 19, 2021
In reply to @change25 "Unfortunately not, it just has the name of the neurologist that requested the test. The number..." + (show)
@change25

Unfortunately not, it just has the name of the neurologist that requested the test. The number that was given is just a generic hospital number that deals with cancellations. My GP is calling me next week so I'll discuss my concerns with him to see what he suggests.

I'm not happy with how things are progressing. I'm tempted to see if I can get my MRI released and head down to Mayo earlier instead.

Jump to this post

@change25 When you see your GP, ask if he can get the MRI released and sent to Mayo. Keep up the good work!

REPLY
Dave Hayward | @davehayward1 | Sep 19, 2021
In reply to @change25 "It turns out I was wrong. I contacted the hospital that conducted the test, they have..." + (show)
@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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I get test results via a "portal". Does your Dr. have this? If so, test results may be there. If not, I'd go to the Dr's. office and ask for the results.

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1 reply
one00100 | @one00100 | Sep 19, 2021

Spouse diagnosed with small fiber Neuropathy. Is there a more appropriate site here?

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