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Old 05-19-2013, 12:46 AM   #1
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update: sharing some results - antibodies

hi all,

i got the result of my blood tests and mri s today and i d like to know your opinion.

*mri radiology report: normal/ both brain and spine.
*blood test: ts3,4 are within the range, still close to borderline overactive. unfortunately 'antibody thyroid peroxidase' is now 1098. three weeks ago it was 800, and in early march it was 500.

my thoughts:

well it doesn't seem like ms until now ( regardless of all ms-like symptoms)- however as you have suggested i m seeing ms specialist late june. i read a good article about those with >1000 antibody thyroid peroxidase. it sounds like this could be an indication of another autoimmune system ( lupus, diabetes, and even ms..) that will also put person into the risk of developing autoimmune thyroid disorder (Hashi). today i saw the gp and i asked him to write me a number of antibodies test including ana, those for lupus, and sjogren's, celiac and insulin. if i don't read these things in this board and internet, doctors that i v met are helpless - until i ask about specific blood tests they have no other idea.

i dont know what is happening : ) i have symptoms from different autoimmune diseases (coldness, fatigue, tingling, numbness, electric shock sensations, ms hug, spasms, burning back when i bend, bladder problems, cognitive issues, bitter/salty taste, coordination, weakness ..... ). i eat a very healthy diet. i do meditation for yrs. i recently take things that are told to be good for immune system. but i strongly believe regardless of these + things, these all happened because i was working very hard in 2011-mid 2012 and i was under stress at that time for a number of things.

do you have any idea of which specialist can help with these? which type of doctor can have a holistic view that links different symptoms together?

 
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Old 05-19-2013, 05:10 AM   #2
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Re: update: sharing some results - antibodies

Shahila,
Unfortunately, I think you have to rule MS out at this time. None of your tests are coming back pointing this way. As you already have the thyroid info, I really think that is the direction you have to continue to move in.

I wish you the best- and that you start to feel better soon but nothing you have posted has really sounded like MS and your test results are also not sounding very MS like in nature.

Your symptoms which you describe, as being autoimmune in nature, could be- but they are definately thyroid issues- and could just as easily be from a pinched nerve in your back or shoulder. Im not dismissing you, but holistic is not the way to go- maybe you need to be looking into something less holistic and more definitive. A CT scan might be your next test of choice. Its just a suggestion. (MRI wouldnt have shown pinched nerves).

Good luck
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Old 05-19-2013, 05:18 AM   #3
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Re: update: sharing some results - antibodies

hi Nikki, i am fine as long as there is some medication for whatever it is. the endo initially gave me medicine for thyroid but in few hours when she got the result she called me and said i shouldnt take them as the results sound normal to her, except antibodies that she didnt say anything about that.

 
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Old 05-19-2013, 09:16 AM   #4
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Re: update: sharing some results - antibodies

Shahila,

I would definitely follow up on what anti-bodies were found. I am glad your endo called to put you off the meds. You need not get messed up for no reason. You might check the thyroid board here on this site and see if you find anything similar.
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Old 05-19-2013, 10:53 PM   #5
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Re: update: sharing some results - antibodies

Quote:
Originally Posted by MSJayhawk View Post
Shahila,

I would definitely follow up on what anti-bodies were found. I am glad your endo called to put you off the meds. You need not get messed up for no reason. You might check the thyroid board here on this site and see if you find anything similar.
Jayhawk, well, thanks to this board that shares similar stories .. i posted in thyroid board, they tell me u need to wait and see the failure of ur thyroid because of antibodies and i dont agree. all the similar stories there have ended up coming to this board as the symptoms look neurological like ms. but i see most of the people with similar stories as mine have stopped posting after a while, 2006,7,2011 - i guess they were all exhausted..

i saw the endo today - she says ur thyroid is kind of normal i cant give u medication as it makes it hypo. and she said nothing about how to deal with antibodies. but at least i have read selenium can work.

i m more sick these days - u were right about my trip. i dont know how i want to make it with this health. today i had another sets of blood test for other antibodies. i d like to say please pray for me, but we r all many- i dont know how can i pray for everyone - i like too but there r many in my mind now.

 
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Old 05-19-2013, 11:09 PM   #6
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Re: update: sharing some results - antibodies

Shahila,

No worries. You are in my prayers. Sorry you could not find better results on the thyroid board. I certainly hope you can still make your trip. I have to wonder to if you will actually improve because you will be getting out of late autumn/winter?

Stay strong and get the rest you need when you can.
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Old 05-19-2013, 11:21 PM   #7
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Re: update: sharing some results - antibodies

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Originally Posted by MSJayhawk View Post
Shahila,

No worries. You are in my prayers. Sorry you could not find better results on the thyroid board. I certainly hope you can still make your trip. I have to wonder to if you will actually improve because you will be getting out of late autumn/winter?

Stay strong and get the rest you need when you can.
thanks Jayhawk. i am very grateful of this board and all the very very helpful people here. i hope so. it s 3 days that here has been really cold. i think every time i m more sick there is a weather factor involved. i remember u when having dark chocolate : )

* also i add that since feb they have found that my Neut is low - this time was 1.9 . it should be 2.7.5. so the lab test had indicated borderline neutropenia. my doctor did not at all raised this. i saw this today. since feb it s been 2,2.2,2.8,2,1.9 .. does it mean anything to u? i remember in April my endo told me that with low neutro u can not have thyroid medicine too. so at least i m glad thyroid is improved.

Last edited by shahila; 05-20-2013 at 02:54 AM.

 
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Old 05-20-2013, 09:00 AM   #8
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Re: update: sharing some results - antibodies

Shahila,

"Neutropenia" is a condition in which the number of neutrophils in the bloodstream is decreased. Neutrophils are a type of white blood cell also known as polymorphonuclear leukocytes or PMNs. There are 5 types of white blood cells. The neutrophils are produced in your bone marrow and have a life of 3 days.

If your body has been dealing with an infection, this might cause a change in the number of neutrophils available. This would not fall into the neurologist's area, but perhaps your GP or endo can help you. The "low' count really varies here in the US, but most facilities count anything less than 1500 neutrophils per microliter as low (I do not know how this translates to the numbers you shared). If your count drops to fewer than 500 per microliter, the bacteria in your intestines can cause an infection. Neutrophils mainly deal with bacteria and fungi; therefore, any CNS symptoms could be a mimicry.

I hope this helps you a bit!
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Old 05-20-2013, 05:38 PM   #9
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Re: update: sharing some results - antibodies

Quote:
Originally Posted by MSJayhawk View Post
Shahila,

"Neutropenia" is a condition in which the number of neutrophils in the bloodstream is decreased. Neutrophils are a type of white blood cell also known as polymorphonuclear leukocytes or PMNs. There are 5 types of white blood cells. The neutrophils are produced in your bone marrow and have a life of 3 days.

If your body has been dealing with an infection, this might cause a change in the number of neutrophils available. This would not fall into the neurologist's area, but perhaps your GP or endo can help you. The "low' count really varies here in the US, but most facilities count anything less than 1500 neutrophils per microliter as low (I do not know how this translates to the numbers you shared). If your count drops to fewer than 500 per microliter, the bacteria in your intestines can cause an infection. Neutrophils mainly deal with bacteria and fungi; therefore, any CNS symptoms could be a mimicry.

I hope this helps you a bit!
thanks Jayhawk. this morning i had a hot shower and after that all my body has started tingling and itching .. it is such a difficult situation and i couldnt go to work . with this symptom i m sure it is not ms anymore.. i want to wear my shoes so so i bend then all my back starts tingling burning. horrible

Last edited by shahila; 05-20-2013 at 05:39 PM.

 
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Old 05-20-2013, 06:19 PM   #10
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Re: update: sharing some results - antibodies

Shahila,

The tingling and itching after a hot shower should not be the reason to dismiss MS as a possibility. Some MSers experience similar symptoms following a hot shower. Today I felt the same, but when I was getting hot from my work in the garden.

I am sorry you could not make it to work today. You might need to find a temperature zone on your shower setting. I have mine and have it marked just as a reminder!
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Old 05-20-2013, 07:12 PM   #11
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Re: update: sharing some results - antibodies

Shahila,
I wrote a lengthy response to you a few days ago and now see it never posted. Anyway, just to chime in with the others: I think your itching after shower is caused by histamine release. Many people with thyroid antibodies get itching and outright hives associated with the autoimmune thyroiditis. Neutropenia can be a sign of lupus, another autoimmune disorder that sometimes co-exists with thyroiditis and is often confused with MS at beginning because of some similarities in symptoms. I am hoping the new antibody yesys just drawn include tests for lupus. Try this for the itching: Take an antihistamine an hour before your shower. Use lukewarm water, not hot. That should reduce your itching. A non-drowsy antihistamine can be taken in AM and Benadryl at night can be used as it will help you sleep too. Let us know what happens. The numbmess and tingling could be peripheral neuropathy caused by Vit B 12 and/or folic acid deficiency. B12 deficiencies are common in lupus and both can be measured in blood too. Maybe Dr can add those on to the serum they just drew. Vit D also. Cognitive dysfunction is also common in lupus. I hope you get some answers with this set of tests.

Last edited by ladybud; 05-20-2013 at 07:14 PM. Reason: typo

 
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Old 05-20-2013, 09:08 PM   #12
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Re: update: sharing some results - antibodies

Quote:
Originally Posted by ladybud View Post
Shahila,
I wrote a lengthy response to you a few days ago and now see it never posted. Anyway, just to chime in with the others: I think your itching after shower is caused by histamine release. Many people with thyroid antibodies get itching and outright hives associated with the autoimmune thyroiditis. Neutropenia can be a sign of lupus, another autoimmune disorder that sometimes co-exists with thyroiditis and is often confused with MS at beginning because of some similarities in symptoms. I am hoping the new antibody yesys just drawn include tests for lupus. Try this for the itching: Take an antihistamine an hour before your shower. Use lukewarm water, not hot. That should reduce your itching. A non-drowsy antihistamine can be taken in AM and Benadryl at night can be used as it will help you sleep too. Let us know what happens. The numbmess and tingling could be peripheral neuropathy caused by Vit B 12 and/or folic acid deficiency. B12 deficiencies are common in lupus and both can be measured in blood too. Maybe Dr can add those on to the serum they just drew. Vit D also. Cognitive dysfunction is also common in lupus. I hope you get some answers with this set of tests.
oh, thank you very much for writing to me. these posts are resources that are helping me in my daily life .. i really appreciate all of you .. otherwise i dont know to whom i talk to.

i also think antibodies are bringing these sensitivity. the reason i said it is not ms is that it sounds ms to be localized, but my tingling has been widespread now. i ll take antihistamine as you suggested. i understand i shouldnt take hot water, but i feel extremely cold, so when i go to take shower i make it very very hot because i feel inside me is freezing. when i come out of bath, i see my feet are red because of heat but the rest of body looks fine. however soon after that i have all sorts of pain. i cant tolerate both cold and heat.

my b12 and iron and D are good. i asked my gp to run tests for antibodies including those for lupus. so the results should come in few days (cardiolipin, igm, ana, lups anticoagulant, anti gilliadin ab, ss-a, ss-b, anti ds dna, anti thrombin ab, antismith ab, anti-cardiolipin ab, esr). today i booked for another doctor that i heard he has expertise with autoimmune disorders ( June). btw, i also know Fibromyalgia can have similar symptoms too.

it is such a challenging situation - i dont mind anymore if it is lupus, ms, etc, because these symptoms have made me feel miserable.

Is there anything i can take to tolerate this situation until June?

Last edited by shahila; 05-20-2013 at 09:36 PM.

 
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Old 05-20-2013, 09:12 PM   #13
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Re: update: sharing some results - antibodies

Quote:
Originally Posted by MSJayhawk View Post
Shahila,

The tingling and itching after a hot shower should not be the reason to dismiss MS as a possibility. Some MSers experience similar symptoms following a hot shower. Today I felt the same, but when I was getting hot from my work in the garden.

I am sorry you could not make it to work today. You might need to find a temperature zone on your shower setting. I have mine and have it marked just as a reminder!
Jayhawk,

do you get tingling all over body after shower? today i got tingling in face, neck, hands, arms, legs, feet, head, everywhere. i had less tingling last month and more numbness. it is reversed now. i think ms is more localized. isnt it? i also read in my response to previous post that i feel very cold -not a common type of feeling cold - so i just make the water so hot and still i dont feel it very hot - so my feet turn red and look like burned and i still feel heat is not inside me!

 
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Old 05-20-2013, 10:21 PM   #14
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Re: update: sharing some results - antibodies

Shahila,

Actually I have had all over tingles when I got out of the shower. Once it was due to sensitivity to a shampoo change (the following week no problem), once it was due to my towel (the following day different fabric towel and no problem), and sometimes for no apparent reason. I have sometimes given in to my misperception and turned my shower past my mark because the shower did not feel warm. I came out like a "Shrimp on the Barbie" !!

At this point, you should know that you are doing or have done everything possible. Now you play a waiting game for results which, I hope, will give you some definitive answers. I am still hoping you can wave good-bye to MS in your rear view mirror while finding a simple remedy. Stay strong as you will never be alone nor do you have to ever feel alone.
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Old 05-20-2013, 11:52 PM   #15
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Re: update: sharing some results - antibodies

Quote:
Originally Posted by MSJayhawk View Post
Shahila,

Actually I have had all over tingles when I got out of the shower. Once it was due to sensitivity to a shampoo change (the following week no problem), once it was due to my towel (the following day different fabric towel and no problem), and sometimes for no apparent reason. I have sometimes given in to my misperception and turned my shower past my mark because the shower did not feel warm. I came out like a "Shrimp on the Barbie" !!

At this point, you should know that you are doing or have done everything possible. Now you play a waiting game for results which, I hope, will give you some definitive answers. I am still hoping you can wave good-bye to MS in your rear view mirror while finding a simple remedy. Stay strong as you will never be alone nor do you have to ever feel alone.
Jayhawk,

ur 'shrimp on the barbie' story is very similar to me. my feet looks purple after shower.i was told that my appointment with the new doctor regarding autoimmune is one hour - which is a good sign and i am hopeful that he is interested in discovering the cause of problems.

many thanks again for everything and all your words that mean a lot to me. at least i m glad that when i was healthy and not sick every single day i got up saying thank you for everything and my health. i ll keep u posted : x

 
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