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Muscle Weakness And Pain


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31 replies to this topic

#16 frieze

 
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Posted 23 October 2013 - 04:37 AM

Wow! I guess that's Kaiser for you. I've read Ferritin should be at least 50 but not sure either. My GI dr suspects either K or C because I get bruises that come from nowhere but of course Kaiser doesn't test for those :-/

It's really difficult to get any help from my Dr when every Kaiser Dr I've seen says my blood work looks "great"

go in with the tests you want, when they won't do them tell them you want, in writing, why they won't.  Also, check the cost, perhaps you could afford the testing yourself.

PS with the easy bruising, testing for low C and K should be a "no brainer".


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#17 answerseeker

 
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Posted 23 October 2013 - 07:24 AM

Yeah should be no brainier! Even my GI that diagnosed me thinks for sure either k or c but both he and my gp says kaiser doesn't test for it. I'll ask for it and check the cost to have it done. That would certainly answer all my questions if those too were low. And when I researched causes for the low alkaline phosphate (it was only 22) one of the causes was vit c defiency
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Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

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#18 cyclinglady

 
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Posted 23 October 2013 - 10:15 AM

Asthma?  Using an inhaler?  Side effects from steriods can cause bruising and broken capillaries -- especially if you are vitamin and mineral deficient.  Something else to think about!


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#19 cristiana

 
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Posted 23 October 2013 - 10:45 AM

Hi Answerseeker.  It is strange you should have just posted this as I am looking for some of the same answers myself.  I have been gluten free, bar a few very annoying accidents, since May but a feel lot weaker in my body than I did a year ago pre-diagnosis, although the gastro symptoms have gone.   My legs and arms at times don’t feel as if they are part of me – very difficult to explain.  However I do find that I feel stronger if I eat more protein.

 

I also feel I am constantly on board ship - new since I went gluten-free.  Doctors seem at a loss.  I too have neck, and back, pain.  Yesterday I went to see a physio who found I have very tense neck muscles.  I'm wondering if this is affecting how my limbs are feeling?  Anyway, she is going to work on those what she told me is when I sleep I  should try to make a butterfly shape out of the pillow and put my  neck on that firm middle bit (the bunched up bit).  I don’t know if that will help your neck?  I am not sure what your red pinprick spots look like but I have had little red pinprick spots all my life and the doctor has never been concerned.  They did seem to get worse around the time of my diagnosis.  That said, my husband who is the picture of health has them worse than me!   


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#20 answerseeker

 
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Posted 23 October 2013 - 10:56 AM

it's more of a rash, you can see a pic on my blog. I emailed my dr. I can't see a derm unless I have a referral ugghh


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Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#21 answerseeker

 
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Posted 23 October 2013 - 10:59 AM

This is the email I sent my Dr. today and sent pictures of the rash, the bulging veins, and the bruising.

 

 

Dr. Baghat:

 

I've attached images of the bruising, the veins, and the red rash.

If you look over my office visits you will see my heart rate was always high, yet this has never been addressed

My MCV is 99 when I researched this, it was documented that anything over 95 should be looked at especially if symptoms are present. At least have hematology take a look

RDW,RBC 12.4 only .4 above the lowest range

I get muscle weakness and can barely make it up the stairs at times, fatigue, fast heart rate, rash, dizziness, shortness of breath, and asthma has been persistent.

please consult with hematology or refer me so I can make an appointment. I tried to make an appointment with Dermatology for the rash but I need a referral.


 

 

I'll update if I get any further answers from hematology. I think it's some type of anemia because of the high MCV what do you guys think?


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Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#22 answerseeker

 
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Posted 23 October 2013 - 11:03 AM

Asthma?  Using an inhaler?  Side effects from steriods can cause bruising and broken capillaries -- especially if you are vitamin and mineral deficient.  Something else to think about!

I've had asthma since 2012 and this is all new within the last 2 months. I was even on prednisone when I was first diagnosed with asthma because it was so bad and never had these symptoms so I don't know.

 

When the pulmonary specialist diagnosed my asthma he seemed to think there was something more because it was so bad. He suspected maybe vasculitis but my insurance changed and now I have Kaiser and it's like pulling teeth to get proper testing or to even see a specialist.


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Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#23 nvsmom

 
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Posted 23 October 2013 - 07:09 PM

This has a list of causes of petechia (tiney red dots). I had those when I had ITP (very low platelet count) so I know it can be serious, but simple causes like coughing fits can cause it too.

 

I hope you find answers.,

 

Ummm... I guess it helps to actually post the link, eh?  :huh: Sorry 'bout that. 

 http://www.mayoclini...DSECTION=causes


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#24 Pegleg84

 
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Posted 24 October 2013 - 09:30 AM

No idea about the red dots either, but hopefully the dermatologist will help you out.

 

Lori, I get the aches and muscle weakness after a glutening, but thankfully not as bad as your situation. More protein helps. Digestive enzymes help absorb it. Have you ruled out other intolerances as well?

 

I'm also not sure what "normal" Iron levels should be, but I do know that 12 or lower is anemic, so 30+ is probably not bad.

Good luck getting the testing done

 

Also, Christina,

I don't want to hijack the post, but just want to mention that I too had the "being on a ship" feeling for quite a while, and still get it on occasion. I was convinced something was wrong with my inner ear, but it seems to be more of a sinus thing affected by diet (soy, dairy, too much salt, and of course gluten will set it off). I'd recommend looking at dairy and soy as possible intolerances if you haven't already.


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#25 answerseeker

 
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Posted 24 October 2013 - 11:10 AM

No idea about the red dots either, but hopefully the dermatologist will help you out.

 

Lori, I get the aches and muscle weakness after a glutening, but thankfully not as bad as your situation. More protein helps. Digestive enzymes help absorb it. Have you ruled out other intolerances as well?

 

I'm also not sure what "normal" Iron levels should be, but I do know that 12 or lower is anemic, so 30+ is probably not bad.

Good luck getting the testing done

 

Also, Christina,

I don't want to hijack the post, but just want to mention that I too had the "being on a ship" feeling for quite a while, and still get it on occasion. I was convinced something was wrong with my inner ear, but it seems to be more of a sinus thing affected by diet (soy, dairy, too much salt, and of course gluten will set it off). I'd recommend looking at dairy and soy as possible intolerances if you haven't already.

I think I better take a look at soy. I drink an ensure shake pretty much everyday to get nutrients but it has a lot of soy and I also notice the more packaged gluten free foods I eat, the worse I feel.


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Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#26 cristiana

 
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Posted 26 October 2013 - 05:42 AM

Thanks Pegleg - v. helpful.

 

Answerseeker, just to say my ferritin level is about the same as yours but has gone up about 10 points since starting the gluten-free diet, and my consultant was pleased it was going up but he has asked me to keep taking ferrous glucanate for another six months so I guess he thought there was still room for improvement.  I hope you get some answers soon.


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Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

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#27 answerseeker

 
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Posted 26 October 2013 - 08:05 AM

Thanks Pegleg - v. helpful.

 

Answerseeker, just to say my ferritin level is about the same as yours but has gone up about 10 points since starting the gluten-free diet, and my consultant was pleased it was going up but he has asked me to keep taking ferrous glucanate for another six months so I guess he thought there was still room for improvement.  I hope you get some answers soon.

mine was 22 at diagnosis so it has gone up which is great. interesting how Kaiser says it's normal and doesn't treat it but yours has you taking supplements

 

Do you all think I should be taking supplements for these levels? I think I may go to a natural type dr and have them check all my levels and get their advice

 

btw, I got my dermatology referal so I will let you all know about the rash when I get my appointment, however my Dr. will not give me a hematology referal because he says my labs are "normal" yeah the huge bruises I get on the back of my legs are normal, the fast heart rate normal, the muscle pain and weakness......all normal. I'm beyond frustrated at Kaiser at this point but our insurance changes in Jan


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Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#28 GF Lover

 
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Posted 26 October 2013 - 08:22 AM

Lori,

 

Hang in there.  How disappointing about the Doctor visit, I'm sorry.  Hopefully the Derm visit will yield some information.  So many of us here have suffered 15-30 years trying to get help.  If you can get with a "Natural" doctor like you mentioned, make sure they can run lab tests on nutrition levels before you commit to one.  Keep bouncing ideas around here.  We will help all we can.

 

Colleen


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#29 cristiana

 
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Posted 26 October 2013 - 09:31 AM

Hi Answerseeker

I should say that my iron level was very low a year ago (7!) - they suspected the usual women's stuff.  So I was put onto iron then.  Finally they discovered it was celiac disease and it was at that point the gastro consultant said he'd like it to be higher than 20, which it was in the spring.   I think it is v. wise to get levels checked before going onto supplements, and I guess good to have them monitored from then on.  Here in the UK they aren't checking my B12 unless I ask for it, and when they did last check it was 195 so I think I would like that checked again soon, although I think the supplements are working because most of the pins and needles are disappearing.  

I do sympathise, all this waiting for answers isn't easy.


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Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

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#30 skullgrl

 
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Posted 05 November 2013 - 03:18 PM

One thing the muscle weakness and pain could be; my lovely rheumatologist told me they JUST raised the acceptable level of B12 from 190 to 700. How do they get it that wrong? Pernicious Anemia could be the cause (low b12 causing low iron).


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