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Old 11-17-2011, 04:13 PM   #1
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Ck and IgM raised and nerve conduction test results

Hello fellow fibro suffers, I seem to be going round in circles and could really do with some help.
My Ck and IgM are raised, and I have purely sensory axonal neuropathy affecting my feet, or as I would describe I have very little feeling in my toes and I trip/fall often.
I feel so ill sometimes, and I guess because my family (with the exception of my 1 daughter) dont ever ask how I am or want to know about fibro, so I am feeling a bit sorry for myself if the truth be known, sorry.
My DR also said that the eye pain I get is due to allergic conjunctivitis BUT my only symptom is eye pain.

If anyone can help me with any of the above I will be truly grateful .
Thank you , from someone who seems to have been under a shaddow all my life.

 
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Old 11-18-2011, 06:37 AM   #2
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Re: Ck and IgM raised and nerve conduction test results

hi shaddow,
welcome. dear neuropathy. don't ya just love it? giggle. i do the same thing and have learned to laugh at myself. also learned how to fall without getting hurt!
learn to laugh and learn to stand mostly alone with fibro. the only understanding is in having it, wouldn't wish that on anyone. you can educate family if you think it is worth your energy. they may or may not get it. empathy and space are all we can really ask for from family. it's a lot and enough.
it's easy to feel sorry for yourself, it's also okay, as long as you don't dwell in it. that will take you to a place you may not like being.
i remember years ago asking why me? the answer i got was why not you? that shut me up, giggle.
remember to breath slowly and deeply. take your time doing things. walk more sedately. i count my steps, it helps me stay focused on my feet moving properly. i do look at my feet often when walking. gotta be sure they are behaving. giggle.
peace,
bluelakelady

 
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Old 11-22-2011, 07:59 AM   #3
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Re: Ck and IgM raised and nerve conduction test results

Quote:
Originally Posted by bluelakelady View Post
hi shaddow,
welcome. dear neuropathy. don't ya just love it? giggle. i do the same thing and have learned to laugh at myself. also learned how to fall without getting hurt!
learn to laugh and learn to stand mostly alone with fibro. the only understanding is in having it, wouldn't wish that on anyone. you can educate family if you think it is worth your energy. they may or may not get it. empathy and space are all we can really ask for from family. it's a lot and enough.
it's easy to feel sorry for yourself, it's also okay, as long as you don't dwell in it. that will take you to a place you may not like being.
i remember years ago asking why me? the answer i got was why not you? that shut me up, giggle.
remember to breath slowly and deeply. take your time doing things. walk more sedately. i count my steps, it helps me stay focused on my feet moving properly. i do look at my feet often when walking. gotta be sure they are behaving. giggle.
peace,
bluelakelady
Hi Bluelakelady thank you for your reply and understanding and help. I dont get to use pc very often, hence the delay in answering, so sorry bout that.
I would get quite down about my family not bothering to even try to understand fibro and how I feel, but now I no its just not worth it.And i know that self pitty is a bad place to go but when your at rock bottom I find it very difficult.
My youngest daughter has done all she can to find out about it. My eldest has a son, my grandson who has a very bad heart condition so I no that she has more than enough to cope with. My middle daughter does not seem to want to know.
Yes the tripping(FALLING) is quite a problem, as well as being embarrassing and painfull.
When I do get the chance to use this pc i am straight on this sight. The info and realiseation that there is someone out there that understands and knows what its all about is so so helpfull and a blessing that everyone shares their problems and someone like you who is so wise can and does give support to someone like me . And for that I thank you very much and also thank all other posters for their info and understanding.

AND A LOAD OF PEACE COMMING STRAIGHT BACK AT YOU.

Shaddow.

 
Old 11-22-2011, 03:05 PM   #4
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Re: Ck and IgM raised and nerve conduction test results

Hi Shaddow - I'm unfamiliar with neuropathy so can't help you with that one I'm afraid. I just wanted to post that this forum is a fibro family - full of people who have in some shape or form been there, seen it, done it and got the T shirt!! So plenty of support here when you need it
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Old 11-23-2011, 12:03 PM   #5
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Re: Ck and IgM raised and nerve conduction test results

Hi thesweetlife
Thank you for your support, and really just knowing that someone is out there is so well, overwhelming. I have posted in the past with little responce, BUT and that is a BIG BUT as i dont get to use pc very often my responce time may have been the cause. And believe it or not to get a reply from someone so near is so WONDERFULL. And at the same time to get an answer from so far away shows how small the wourld is.
I am just so happy to be able to 'talk' to someone who knows where I'm comming from who does not judge or dissmiss me.
I have only just found out that I have neuropaty after a nurve conduction test. I have no reflex in either feet. My toes are numb, and this same odd feeling is progressing up the side of my r leg.
So sorry about the ramble 'am known for it'.
I'm from Hereford so not far.

Sending you sunshine without which there would be no shaddow.
Shaddow

 
Old 11-23-2011, 11:16 PM   #6
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Re: Ck and IgM raised and nerve conduction test results

My son used to play rugby in Hereford - small small world
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Old 11-30-2011, 03:50 PM   #7
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Re: Ck and IgM raised and nerve conduction test results

Yes you are right, very small.

I have appointment at Dr in the morning about results of nurve conduction test, wonder what she will say, wonder what she is like! Not met her yet, she may even be one of these Dr who are 'sceptical' when it comes to Fibro. Well, we will see.
All I want to do of late is sleep, except when I need to sleep I can't, annoying just is'nt the right word for how I feel at 3am when I have not even dozed.
I have had one of the worst weeks as far as pain goes.... Dr at hospital said that the eye pain I get is caused from allergic conjunctivitis!!!!! --anyone else out there been told the same?

Sunshine and smiles

Shaddow

 
Old 11-30-2011, 06:02 PM   #8
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Re: Ck and IgM raised and nerve conduction test results

I've just been told by both an optometrist and an opthalmalogist that there's nothing wrong with my eyes that would cause the kind of pain that I have. They're always sore, feel dry without being dry. For years I was calling it chronic eye strain from working on a computer all day. It gets worse now with, what else, too much computer time, and reading and of course weariness.

I'm sad you have this too, but glad to hear that I'm not alone at the same time.

Good luck with your new doctor Shadow.

 
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Old 11-30-2011, 07:50 PM   #9
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Re: Ck and IgM raised and nerve conduction test results

Hi Shaddow
I know how you feel. I have problems like yours too. Your not alone. and my prayers are with you. Keep you chin up and if you are anything like me you try to hide your condition from your family. Dont.... they can help you. once I explained and took my family to a support group I found there help was amazing. Keep smiling.
aplcazzie

 
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Old 12-01-2011, 04:04 PM   #10
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Re: Ck and IgM raised and nerve conduction test results

Hello lovely people and fellow fibro's.

Thank you so much for your support, understanding and your time taken to reply.
WELL I saw my 'new' Dr this am, ......... what a waste of my time!!!!!!!
She had not taken the time to read any medical notes, I gave her a letter that I had received from the hospital which she read. She then said that she nor anyone else was likely to be able to tell me the cause of the neuropathy, or the eye pain, then went into detail about conjunctivitis, from which I have not suffered since childhood. and the eye pain was another thing that would remain a mystery.
The letter to which I refer, was from a Rheumatologist who sent me for the nurve tests after not being able to find any reflex in either knee or foot.
I have not seen a neurologist for years, I really think I need to see one.
I would appreciate your views.

Thanks in advance.

A,B,P,D,

Sunny smiles.
Shaddow

 
Old 12-02-2011, 05:59 AM   #11
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Re: Ck and IgM raised and nerve conduction test results

hi,
sorry it was a waste. question. in all your tests have you been tested for sjogrens disease? it's a simple blood test and worth having given your symptoms. just a thought.
peace,
blue

 
Old 12-02-2011, 07:03 AM   #12
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Re: Ck and IgM raised and nerve conduction test results

It is very frustraing to be treated like that by a doctor. I think that you should ask your doctor for a referral to a neurologist, and why (make notes and refer to them as you're talking to the doctor). And, as Blue suggested, a blood test for sjogrens disease. Good luck Shadow.

 
Old 12-02-2011, 04:32 PM   #13
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Re: Ck and IgM raised and nerve conduction test results

Hi Blue and Christine

Thanks for your reply's, I had not thought of Sjogren's, I am always thirsty, always take a drink to bed, so thats fits, but I don't have dry eyes, just very painful ones.
I do think your right I should see a neurologist, may even get some answers!!! (or am i asking to much?).
It seems that just when I think everything fits and I know what i have, I realise that things are not that simple and it could be any number of things. In truth I have been a little narrow minded,
Blue, i so admire your philosophy on life, I think I should focus more on the positives and less on the negatives

Best wishes
Shaddow

 
Old 12-03-2011, 06:50 AM   #14
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Re: Ck and IgM raised and nerve conduction test results

hi shaddow,
blush, thank you. i do love being alive in this body learning, learning, learning. giggle. i am glad you are going to be tested for sjogrens. i also hope the test comes back negative and you can sigh in relief, one less worry. giggle.
it is a beautiful day in sunny norcal. enjoy your day today. giggle, i know i will.
peace,
blue
ps. the dry eye thing started 8 years ago after surgery. the eye pain has been with me longer but i forget how long. i have had it at least 17 years based on history. diagnosed less than a year ago.

Last edited by bluelakelady; 12-03-2011 at 06:51 AM.

 
Old 12-03-2011, 11:16 AM   #15
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Re: Ck and IgM raised and nerve conduction test results

Hello!
I'm sorry you are having a tough time!
My family isn't very understanding either... Well, my 12 yr old is supportive of me even though she only knows the basics of fibro. She'll tell me to calm down, don't stress, go relax, lol she's sweet the other 3 kids are too young to understand (9, 8 & 2). Then my husband was the cause of stress... I have printed out info, showed him website, read him info cause I knew he wouldn't read it, & even taken him to my Rhumetologist. The dr basically said that my brain amplifys pain. So my husband said the next day "to bad you couldn't just tell your brain not to feel pain... ". All of us here kno it's more than that... But it's been a struggle. Especially giving up allot of our birds ( raised farm & game birds). I've had to have my husband take over most of it. My mom is supportive. I've never been healthy, even as a kid. But she's always printing out info or savage articles & magic herbs, diets, tests to have done ect. Always because someone had probs like mine then was magically better. I have to tell her I've had te test, I already take that herb, ect. Atleast she tries
One thing I had to learn & accept... No one will understand what you are going through unless they have it also... So I accepted that... But wanted support. Then I had to accept that not everyone can be supportive. It's hard for them to understand when I look healthy & happy... I can spend a whole day miserable & throwing up, yet look perfectly normal...
Now I just expect people to not be rude. I dont talk talk about my health with any of my other family. Not my dad, siblings, grandparents, aunts & uncles,ect. I believe my mom has told them but i dont think they take it serioulsy. Im fine not having to talk about it with them. I do have a few friends I'll talk about it with. Only one has seen me at my worst. Then my 3rd friend has it also. She was here briefly the other day. I had my hair done & everything but she could still tell I didn't feel good & really tired. No one else can tell that but she can cause she knows...
I think once your grandson gets better, I have faith he will , his mom will be more supportive if you when she can focus & learning about it. Your middle daughter... Is she a teen? She's is denial right now but eventually will come around... Just don't talk to her a out it right now... In the past, my husband would make comments that really hurt. I would get so depressed & of course felt worst... He does better now... I get annoyed though cause for instance I always feel sick. Then my neck, shoulders & my hole back hurts... But I don't compain to him. But if he's sick, neck is sore, ect I hear him complain allot... Anyhow, it's frustrating. But unfortunately I try not to be very supportive. Why should I? Anyhow, I'll stop there...
Now for the neuropothy... My husbands Uncle is in his 60's... He had it his whole life but wasnt diagnosed till a few years ago... The Drs & his parents never took him serious. Then when he was older he bounced from one dr to another, like us.
He's had a tough time. He burned his leg on a heater last year because he didn't feel it... He stays in a motorhome on our property. It's getting worst & falls allot. His dr says he won't be walking much longer... We are looking at having our girls share a room so he can move into the house & have his own room. Our girls are not happy... But they have to learn to not be so selfish. They have it pretty good...
Anyhow, he has had a very hard time. Luckily my husband are both understanding & supportive of him. All of us on this board know how important that is...
If something is bothering me, someonehurt my feelings or made me angry... I come here & vent. I know no one else understands.
Anyhow, yes you should see a neurologist for the neuropothy. That's the kind of dr our uncle sees. I dont recommend a neurologist for the fibro though. I have seen 2 neurologists. The first one was so rude I yelled at her till she left the room. She was awful. No help at all! Then the next one acted like I was making everything up. Don't think he believed in fibro. So I personally don't like Nuerologists but they are good for the nueropothy...
Sorry this so long... Just take care of yourself & ignore negativity from any family. Get the help you need. I've never been one for any kind of pill (Tylenol, meds, vitamins, minerals, ect). But I'm learning we have to take these so we have a better quality in life. I take wellbutrin for anxiety, Lyrica, muscle relaxer, Armour thyroid, then a anti nausea med, then pain killers when needed. Along with vitamins & minerals.
I really think you need Drs help so you can be on the meds you need & be able to take care of yourself...

Take care!
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Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
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Fibromyalgia diagnosed 2009
Neuropathy
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