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Old 01-31-2012, 06:03 PM   #1
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Neuropathy, +ANA, and a ton of bizarre symptoms!

Hello,

I know you guys probably get lots of people asking "what disease do I have?" so I apologize for doing it again! I would love to hear your opinions though because I keep hearing "You've definitely got something going on and it's autoimmune, but it's not typical of any particular disease". I feel awful and it's terribly frustrating not to understand what's happening in my body. It's been 2 years since my symptoms first started though I'd been having on and off flu-like symptoms for several years before that that might have been an early manifestation. I'm not sure.

As far as blood work goes, I have a positive ANA (1:640 speckled) and I once had a positive Rheumatoid Factor though it's been tested several times since and it's been negative. The ANA stays positive at the same level so it's definitely not a fluke. I've been told levels that high are usually caused by a connective tissue disease. I have been tested for all the antibodies associated with the CTD's (lupus, scleroderma, etc.) twice and been negative on all of them. I also have low ferritin, mildly high blood sugar (not diabetic... yet), mildly low vitamin D. Everything else has been fine - thyroid levels, sed rate, CRP, CBC, kidney and liver function, etc. I have had a LOT of blood work run over the last year especially.

My worst symptoms are neurological. I get a lot of tingling, numbness, burning skin, itching, mild muscle weakness, and so on. I also get these neurological episodes lasting about 3-5 hours at a time where I can't control my temperature (chills and flushing), I get bouts of diarrhea, tingling all over (worst in legs), can't think straight (occasionally feeling actually confused and having trouble speaking but usually milder), feel weak, blurry vision in one eye (left), and my extremities get very very cold and turn a grey-purple blotchy colour. I recover completely afterwards though I'm very tired for a while. These episodes are debilitating and frightening. I get them several times a week now. Last winter I was getting them once a month or so with milder neuro symptoms in between (a bit of tingling here and there, crawling on scalp, weak legs, blurry vision). The warm weather made me feel so much better. I had NO episodes like this, NO tingling at all, NO migraines, NO cold hands and feet. It was wonderful from May to October, then the cold returned and I've felt miserable ever since.

I had a brain/spine MRI to rule out MS. I had no lesions. I'm having it repeated soon because that was a year ago and I'm still having all these symptoms.

Other symptoms are flu-like feelings (everything hurts!), muscle and joint aches (though no swelling or redness in joints and joint pain is quite mild), swollen lymph nodes all down my right side (neck, under jaw, under collarbone, around armpit and ribs, inside hip and upper thigh) but not on the left?! They get horribly sore for a day or so at a time, then improve only to come back later. There are 2 under my jaw on the right side that get very hard like little rocks.

My hands and feet swell a bit, especially in the mornings. They also swell in the heat and get bright red and itchy. In the cold they get icy and discoloured though my rheumatologist told me it doesn't really look like Raynaud's, just something else vascular. I get heart palpitations. I have bad heartburn which is controlled with a PPI. I get pain around one side of my sternum - it's very tender. I've had a few splinter hemorrhages in my nails though nothing too bad.

I also have these bizarre sensations that are so hard to explain. One is like I am absolutely dried-out inside - my lungs feel dry and almost burnt and so does the layer under my skin over most of my body. I know it sounds strange, but I don't know how else to explain it. At the same time my nose gets terribly dry inside and sometimes bleeds so I think dryness is an appropriate way to think of it. I don't have dry eyes and mouth though. My eyes are mildly dry sometimes and a bit blurry, but nothing noteworthy really, and my mouth feels normal.

I have half a thyroid due to an operation to remove a nodule 12 years ago. The function seems to be fine, though I just saw an endocrinologist and he's running more bloodwork on thyroid and adrenals. I also have PCOS so he's running some hormonal level tests.

My symptoms started during my pregnancy when I was about 5 months along. They improved for a few months after my daughter's birth and then worsened dramatically after that. I'm 30 years old now and was perfectly healthy before this (well, other than the thyroid and PCOS, which never got in my way). I'm thin, eat fairly well, moderately active, don't smoke, drink a few glasses of wine every week. I take Nexium and Lyrica.

I would love to hear your thoughts! Where do I go from here? I have a rheumatologist but she can't really treat me until she knows what's going on. She wants me to be seen primarily by the neurologist since many of my symptoms are neurological. He says he'll investigate my symptoms and try to help (i.e. the Lyrica) but he thinks the underlying cause is autoimmune and I should be seeing the rheumatologist primarily. I'm miserable and just want some direction...

Thanks!

Zoe

 
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Old 01-31-2012, 06:07 PM   #2
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Re: Neuropathy, +ANA, and a ton of bizarre symptoms!

Also, just wanted to add that none of my symptoms are permanent. They come and go, but I always have something going on every day whether it's tingling/burning in my skin or muscle pain.

I also have some changes to the skin on my forearms. These diagonal lines/grooves appear and a sort of pattern (almost like lizard or snake skin) is visible when anything has been pressing against my arm (e.g. when I carry my daughter around using that arm) or when it's hot and I guess I'm a bit swollen or dehydrated? It's strange. It's been happening since last spring. I have photos of it but don't think I can post them here. My rheumatologist said she had no idea what it was.

 
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Old 01-31-2012, 06:24 PM   #3
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Re: Neuropathy, +ANA, and a ton of bizarre symptoms!

When I read your posts, I remembered seeing an episode of Mystery diagnosis about a man with similar problems with the cold temps. He was fine when he was warm but sick as could be with all sorts of weird symptoms when it was cold. It turned out he had "cold agglutinin disorder". Basically, his blood would start to thicken up in the cold, causing all the problems. This can happen spontaneously after some other illness or body stress like a pregnancy.

This is really, really rare and finding someone who can test and diagnose it would be tough but you would need a hemotologist. It is a blood disorder.

Do some research and you might even be able to find the show on-line and see what this man went through....took him years to figure it out.

Just an idea but what else can make you react so violently to the cold?

Jenny

 
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Old 01-31-2012, 07:57 PM   #4
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Re: Neuropathy, +ANA, and a ton of bizarre symptoms!

Zoe-I'm so sorry for what you are going through. We have very simliar Sx, yet some are different. I was experiencing tons of neuropathy in my hands and feet but it has passed. I started manifesting Sx 5 months after the birth of my daughter last spring. I have not had a positive ANA or RF but I have a slightly elevated sed rate. I also have very low ferritin. Have you been checked for anemia? Also thyroid probs are very common after childbirth and it can take years for thyroid antibodies to show up in bloodwork. My endo says if you have a thyroid autoimmune disorder like graves or Hashimotos (which can be triggered by childbirth) then your chances of having other autoimmune disorders is higher. Check our my post for my full Sx and tell me what you think. The post is called auotimmune? Can't get a Dx. By the way, I'm only 32.


Take care

Tracy

 
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Old 02-01-2012, 10:17 AM   #5
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Re: Neuropathy, +ANA, and a ton of bizarre symptoms!

Have you had a dermatologist look at your skin? And have you had an Opthalmologist look at your eyes? My eyes were watering a lot which ironically is a symptom of dry eyes. Neuropathy is very common in Autoimmune disease. Hmm, Raynaud's doesn't always present with the classic tri-colour phases. Raynaud's is also not just caused by cold, but can also be triggered by stress and small temperature change. If the blotches are lace like on your extremities, it could very well be livedo reticularis. Fatigue is also present. Problem is, a lot of times, AI diseases do not show a specific antibody or direction initially, if ever. It can take a lot of time to get to a diagnosis. If it is something vascular, make sure that you let your neurologist know. I have migraines caused by my scleroderma and must be very careful of the medications I take for them, because of the vascular problems associated with it. Good luck with this and I hope you come up with treatment of your symptoms, if not a name for the cause.

 
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Old 02-17-2012, 07:43 AM   #6
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Re: Neuropathy, +ANA, and a ton of bizarre symptoms!

Hi Zoe! Boy you sound like me at 30! There are autoimmune diseases that cause nuero symptoms. My neuro symptoms, the same you have, are caused by my disease Behcets. All your other symptoms I've had as well. Behcets hallmark symptoms are certain types of skin,mouth and genital sores. If you don't get sores,small ones count, you don't have Behcets. Your doc needs to treat your nuero symptoms ASAP. She can treat you based on symptoms alone. Brain involvemet, is very serious and should not be ignored. If she won't, find another doc ASAP. Good luck! Missi

 
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Old 06-09-2012, 01:17 PM   #7
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Re: Neuropathy, +ANA, and a ton of bizarre symptoms!

Quote:
Originally Posted by zoealexis View Post
Hello,

I know you guys probably get lots of people asking "what disease do I have?" so I apologize for doing it again! I would love to hear your opinions though because I keep hearing "You've definitely got something going on and it's autoimmune, but it's not typical of any particular disease". I feel awful and it's terribly frustrating not to understand what's happening in my body. It's been 2 years since my symptoms first started though I'd been having on and off flu-like symptoms for several years before that that might have been an early manifestation. I'm not sure.

As far as blood work goes, I have a positive ANA (1:640 speckled) and I once had a positive Rheumatoid Factor though it's been tested several times since and it's been negative. The ANA stays positive at the same level so it's definitely not a fluke. I've been told levels that high are usually caused by a connective tissue disease. I have been tested for all the antibodies associated with the CTD's (lupus, scleroderma, etc.) twice and been negative on all of them. I also have low ferritin, mildly high blood sugar (not diabetic... yet), mildly low vitamin D. Everything else has been fine - thyroid levels, sed rate, CRP, CBC, kidney and liver function, etc. I have had a LOT of blood work run over the last year especially.

My worst symptoms are neurological. I get a lot of tingling, numbness, burning skin, itching, mild muscle weakness, and so on. I also get these neurological episodes lasting about 3-5 hours at a time where I can't control my temperature (chills and flushing), I get bouts of diarrhea, tingling all over (worst in legs), can't think straight (occasionally feeling actually confused and having trouble speaking but usually milder), feel weak, blurry vision in one eye (left), and my extremities get very very cold and turn a grey-purple blotchy colour. I recover completely afterwards though I'm very tired for a while. These episodes are debilitating and frightening. I get them several times a week now. Last winter I was getting them once a month or so with milder neuro symptoms in between (a bit of tingling here and there, crawling on scalp, weak legs, blurry vision). The warm weather made me feel so much better. I had NO episodes like this, NO tingling at all, NO migraines, NO cold hands and feet. It was wonderful from May to October, then the cold returned and I've felt miserable ever since.

I had a brain/spine MRI to rule out MS. I had no lesions. I'm having it repeated soon because that was a year ago and I'm still having all these symptoms.

Other symptoms are flu-like feelings (everything hurts!), muscle and joint aches (though no swelling or redness in joints and joint pain is quite mild), swollen lymph nodes all down my right side (neck, under jaw, under collarbone, around armpit and ribs, inside hip and upper thigh) but not on the left?! They get horribly sore for a day or so at a time, then improve only to come back later. There are 2 under my jaw on the right side that get very hard like little rocks.

My hands and feet swell a bit, especially in the mornings. They also swell in the heat and get bright red and itchy. In the cold they get icy and discoloured though my rheumatologist told me it doesn't really look like Raynaud's, just something else vascular. I get heart palpitations. I have bad heartburn which is controlled with a PPI. I get pain around one side of my sternum - it's very tender. I've had a few splinter hemorrhages in my nails though nothing too bad.

I also have these bizarre sensations that are so hard to explain. One is like I am absolutely dried-out inside - my lungs feel dry and almost burnt and so does the layer under my skin over most of my body. I know it sounds strange, but I don't know how else to explain it. At the same time my nose gets terribly dry inside and sometimes bleeds so I think dryness is an appropriate way to think of it. I don't have dry eyes and mouth though. My eyes are mildly dry sometimes and a bit blurry, but nothing noteworthy really, and my mouth feels normal.

I have half a thyroid due to an operation to remove a nodule 12 years ago. The function seems to be fine, though I just saw an endocrinologist and he's running more bloodwork on thyroid and adrenals. I also have PCOS so he's running some hormonal level tests.

My symptoms started during my pregnancy when I was about 5 months along. They improved for a few months after my daughter's birth and then worsened dramatically after that. I'm 30 years old now and was perfectly healthy before this (well, other than the thyroid and PCOS, which never got in my way). I'm thin, eat fairly well, moderately active, don't smoke, drink a few glasses of wine every week. I take Nexium and Lyrica.

I would love to hear your thoughts! Where do I go from here? I have a rheumatologist but she can't really treat me until she knows what's going on. She wants me to be seen primarily by the neurologist since many of my symptoms are neurological. He says he'll investigate my symptoms and try to help (i.e. the Lyrica) but he thinks the underlying cause is autoimmune and I should be seeing the rheumatologist primarily. I'm miserable and just want some direction...

Thanks!

Zoe

 
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Old 06-09-2012, 01:18 PM   #8
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Re: Neuropathy, +ANA, and a ton of bizarre symptoms!

You said something about having flu like symtoms, do you check to see if your running a fever?

 
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Old 06-25-2012, 06:38 AM   #9
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Re: Neuropathy, +ANA, and a ton of bizarre symptoms!

This sounds like you MAY have fibromyalgia on top of your possible rheumatoid arthritis- have you had a tender points exam? I know it is a bit of a basket diagnosis BUT the drugs they use to manage fibro could really help you, especially with the muscle spasms.
The coming and going of symptoms also is indicative of fibro. Do you sometimes have hypertension? Anxiety can seriously contribute to the onset of "flares". GOOD LUCK! Hugs

 
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Old 07-01-2012, 10:35 PM   #10
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Re: Neuropathy, +ANA, and a ton of bizarre symptoms!

Have thu tested your blood clotting agents? I got really weird symptoms when I was pregnant too that lasted months after. I was diagnosed with anti phospholipid syndrome and lupus. It causes all kinds of strange neurological symptoms, blood clots, dizziness, I would look into that.

 
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