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

Posted by change25 @change25, Apr 24 2:41pm

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.

@athenalee

I can relate, small town, rural. Fortunately, Southern Vermont is trendy and the local hospital has an excellent neurologist. Can you be referred to a neurologist near you? Mine thought my issue was possibly Sjogren’s or autoimmune related as I have PBC which caused liver disease (which was only found out by a specialist in a large hospital 2 hours away…my local primary assumed I was an alcoholic!).

So. If you can try to see one. I’m not sure how I’ll be able to move forward with treatment and additional tests I need, but I can drive a few hours and get to a couple of good hospitals, as long as insurance covers it. So, don’t give up!

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I'm sorry to hear that. Are you still unsure what's going on then?
I can, yes – do you think it would be better to see a neurologist instead of a rheumatologist? This week has been awful, pretty much had constant tingling in my legs, arms and hands. I'm having to force my eyelids to stay open and the muscle ache has been horrific. Hopefully our luck will turn around soon.

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@change25

I'm sorry to hear that. Are you still unsure what's going on then?
I can, yes – do you think it would be better to see a neurologist instead of a rheumatologist? This week has been awful, pretty much had constant tingling in my legs, arms and hands. I'm having to force my eyelids to stay open and the muscle ache has been horrific. Hopefully our luck will turn around soon.

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It seems fairly certain I have Sjogren’s, but my labs showed there is something else going on, so I’m to see both a hematologist and a rheumatologist. With neuropathy, if it were me, I’d see both a rheumatologist and a neurologist, at least until you get a firm diagnosis.

My neurologist took labs, but he also had me get an MRI of my brain and a second of my spine. And, I got an EMG and nerve induction test. All these can help the neurologist determine what is causing your symptoms. And, down the line, the neurologist may be able to help you better adapt to neuropathy and also prescribe more appropriate meds for pain.

The pain is clearly the worse symptom. For me I’ve learned to plan shopping, laundry, etc. as these make me hurt worse and are exhausting. Also, sleep can be hard, which you’ve undoubtedly found, so I take 200-300 mg of Gabapentin at night. This helps with the foot pain, nerve pain, and sleep. I also walk 1.5-2.5 miles a day and do Tai Chi exercises, to help keep me in shape and more limber.

I hope you get your appointment soon! Let me know how things go. There are so many informed people on Connects and I was just told about a discussion group for Sjogren’s. PN and autoimmune diseases are both hard to diagnosis and find solutions. Moreover, I’ve discovered they are often related, since I now have been diagnosed with 3! All with different treatments.

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@athenalee

It seems fairly certain I have Sjogren’s, but my labs showed there is something else going on, so I’m to see both a hematologist and a rheumatologist. With neuropathy, if it were me, I’d see both a rheumatologist and a neurologist, at least until you get a firm diagnosis.

My neurologist took labs, but he also had me get an MRI of my brain and a second of my spine. And, I got an EMG and nerve induction test. All these can help the neurologist determine what is causing your symptoms. And, down the line, the neurologist may be able to help you better adapt to neuropathy and also prescribe more appropriate meds for pain.

The pain is clearly the worse symptom. For me I’ve learned to plan shopping, laundry, etc. as these make me hurt worse and are exhausting. Also, sleep can be hard, which you’ve undoubtedly found, so I take 200-300 mg of Gabapentin at night. This helps with the foot pain, nerve pain, and sleep. I also walk 1.5-2.5 miles a day and do Tai Chi exercises, to help keep me in shape and more limber.

I hope you get your appointment soon! Let me know how things go. There are so many informed people on Connects and I was just told about a discussion group for Sjogren’s. PN and autoimmune diseases are both hard to diagnosis and find solutions. Moreover, I’ve discovered they are often related, since I now have been diagnosed with 3! All with different treatments.

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It sounds like a minefield, hopefully you'll have a better understanding after your consultations. I'll try to get the ball rolling, I didn't mention to my Dr about the tingling sensation as it's only recently occured. Hopefully, from that along with my other symptoms they'll refer me to a specialist as it's worrying how it's spreading further up my leg and isn't going away. Will do, if anything happens I'll make an update to this page. All the best.

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@change25

It sounds like a minefield, hopefully you'll have a better understanding after your consultations. I'll try to get the ball rolling, I didn't mention to my Dr about the tingling sensation as it's only recently occured. Hopefully, from that along with my other symptoms they'll refer me to a specialist as it's worrying how it's spreading further up my leg and isn't going away. Will do, if anything happens I'll make an update to this page. All the best.

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Hello, @change25, @johnbishop, @becsbuddy, @athenalee, @lacy2 and all……John Bishop is on top of the research on a lot of the supplements, quality, etc. Each of us who've shared with you are dealing with some or most of your symptoms, but since we're not physicians, we're patients like you, we can support and share, but not advise.

I have most of your symptoms and have been dealing with them for over 40 years, I urge you to see a good rheumatologist and he may well refer you to a neurologist. I have several autoimmune diseases, like @athenalee with Sjogren's, Sarcoid, and others….but, you may have something entirely different. The rheumatologist is key as he deals with autoimmune diseases and a lot of strange diagnoses like this.

Also, let me reiterate what Becky and John and Colleen said…..seeing doctors at a large hospital or clinic like Mayo or Cleveland or Mass or whatever can be very important for the right diagnosis and to get treatment begun. Then, at or near home, you have the support network of doctors who can keep everything going smoothly.

I live in a city in Florida near Mayo Florida, so don't have the challenges you do about getting to physicians.
Hopefully, you see the new doc soon and he gets the testing started and you begin to get answers.
Blessings, and may you receive answers and peace. elizabeth

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@ess77

Hello, @change25, @johnbishop, @becsbuddy, @athenalee, @lacy2 and all……John Bishop is on top of the research on a lot of the supplements, quality, etc. Each of us who've shared with you are dealing with some or most of your symptoms, but since we're not physicians, we're patients like you, we can support and share, but not advise.

I have most of your symptoms and have been dealing with them for over 40 years, I urge you to see a good rheumatologist and he may well refer you to a neurologist. I have several autoimmune diseases, like @athenalee with Sjogren's, Sarcoid, and others….but, you may have something entirely different. The rheumatologist is key as he deals with autoimmune diseases and a lot of strange diagnoses like this.

Also, let me reiterate what Becky and John and Colleen said…..seeing doctors at a large hospital or clinic like Mayo or Cleveland or Mass or whatever can be very important for the right diagnosis and to get treatment begun. Then, at or near home, you have the support network of doctors who can keep everything going smoothly.

I live in a city in Florida near Mayo Florida, so don't have the challenges you do about getting to physicians.
Hopefully, you see the new doc soon and he gets the testing started and you begin to get answers.
Blessings, and may you receive answers and peace. elizabeth

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Hello Elizabeth, thanks for getting in touch. Yes, it is a brilliant community and I greatly appreciate all the response I've received. I'm sorry you've had to deal with this for such a long time, hopefully you've managed to find some relief. I'll give my Dr one last try as when I was last seen I did not have this stabbing pain or persistent tingling. Once that avenue has been exhausted I'll look at a larger medical facility. All being well I'll have some answers within the next few weeks.

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Update: I've spoken to my Dr, despite my concerns he is reluctant to refer me to a specialist. However, he is sending me for further blood tests. Are these likely to reveal anything or is it a waste of time? If so I'll just bite the bullet and go private.

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@change25

Update: I've spoken to my Dr, despite my concerns he is reluctant to refer me to a specialist. However, he is sending me for further blood tests. Are these likely to reveal anything or is it a waste of time? If so I'll just bite the bullet and go private.

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@change25 Did your doctor say what the additional blood tests would be looking for? Just wondering if he was blowing off your concerns or really trying to help determine what is causing your symptoms. I imagine a blood test can find a lot of potential causes if they are testing for those specific conditions in the blood.

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@change25

Update: I've spoken to my Dr, despite my concerns he is reluctant to refer me to a specialist. However, he is sending me for further blood tests. Are these likely to reveal anything or is it a waste of time? If so I'll just bite the bullet and go private.

Jump to this post

thing is, why not refer you to a specialist and let the specialist decide ? they prioritize and you may have to wait a while but will put your mind at ease and may have seen many cases such as yours over the years….although maybe wait til next results of blood test? J.

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@johnbishop

@change25 Did your doctor say what the additional blood tests would be looking for? Just wondering if he was blowing off your concerns or really trying to help determine what is causing your symptoms. I imagine a blood test can find a lot of potential causes if they are testing for those specific conditions in the blood.

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Blood tests will give the doc and you whatever information the doctor requests. If he includes things like Sed Rate or other specific tests for autoimmune diseases and tests for various vitamin deficiencies, you may well get somewhere. But, it can also be spinning wheels. What was his reason for not referring you to a specialist? Does he discount what you're telling him or do you know his thinking? Does he have a theory as to what's happening?
Perhaps if you mention your thoughts about autoimmune disorders or vit deficiency he will begin thinking in that direction. At least, ask him to order the more specific testing to ck it out. He may learn something in the process.
Then, a second request for referral is in order.

Does your insurance require a referral to a specialist to cover it? Sometimes we can make appts on our own, depending on the coverage. I'm able to do that, in fact that's how I got to Mayo neurology. I called and explained my situation and got an appointment.
I hope this works for you and he adds some tests. It's interesting how we have to help our doctors, especially if they're not extremely inquisitive. your situation can be too big a challenge for some, but you may be able to get him to work with you on this…..Go for it and do well. You are in control of your life, even tho it may seem out of control at this time. We have to advocate for ourselves, and I found with some of the wonky disorders and diseases, especially autoimmune, doctors can be overwhelmed….too many unknowns. So, you lead him to help you get answers from bloodwork or help you find answers from others. Bless you on this journey. You will find answers! elizabeth

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I have an autoimmune disease, and it took 2 years to diagnose it. The antibody tests came back inconclusive that long, and we didn't suspect it at first. At least for my autoimmune disease, myasthenia gravis, it can take 2 years to figure out what it is. don't give up, make an appointment.

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@johnbishop

@change25 Did your doctor say what the additional blood tests would be looking for? Just wondering if he was blowing off your concerns or really trying to help determine what is causing your symptoms. I imagine a blood test can find a lot of potential causes if they are testing for those specific conditions in the blood.

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He didn't discuss what the specific tests would be for, just that I'd need to have further blood tests. I've got the blood test form which is requesting the following: Blood film, ESR, Full blood count, creatine kinase, CRP, Liver, TSH, 25-hydroxy vitamin D, Anti nuclear antibody and IgG A M & Electrophoresis.

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@ess77

Blood tests will give the doc and you whatever information the doctor requests. If he includes things like Sed Rate or other specific tests for autoimmune diseases and tests for various vitamin deficiencies, you may well get somewhere. But, it can also be spinning wheels. What was his reason for not referring you to a specialist? Does he discount what you're telling him or do you know his thinking? Does he have a theory as to what's happening?
Perhaps if you mention your thoughts about autoimmune disorders or vit deficiency he will begin thinking in that direction. At least, ask him to order the more specific testing to ck it out. He may learn something in the process.
Then, a second request for referral is in order.

Does your insurance require a referral to a specialist to cover it? Sometimes we can make appts on our own, depending on the coverage. I'm able to do that, in fact that's how I got to Mayo neurology. I called and explained my situation and got an appointment.
I hope this works for you and he adds some tests. It's interesting how we have to help our doctors, especially if they're not extremely inquisitive. your situation can be too big a challenge for some, but you may be able to get him to work with you on this…..Go for it and do well. You are in control of your life, even tho it may seem out of control at this time. We have to advocate for ourselves, and I found with some of the wonky disorders and diseases, especially autoimmune, doctors can be overwhelmed….too many unknowns. So, you lead him to help you get answers from bloodwork or help you find answers from others. Bless you on this journey. You will find answers! elizabeth

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I'm not sure to be honest. He seems like he genuinely cares and is willing to listen. I can only assume he's not dealt with a case such as this before as he seems young. Hopefully, these tests reveal something and if not he'll pass me onto someone else. I was meaning to mention that I believed it could well be an autoimmune disease but then I recalled how doctors have reacted in the past and instead remained quiet. Unfortunately, my insurance requires a referral. I'll keep pushing for answers and if nothing happens after these tests I'll be much more direct.

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