Looking for Answers......

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Looking for Answers......

Postby scarletrose » Sun Jul 26, 2015 11:09 am

Hi there :)
This is my first time speaking about this to anyone online..
It has been my own private hell for 5 years now and i feel like i am at my wits end..

I am a 31y.o female.

5 years ago it started with feeling light headed.. Dizzy. Almost felt like i was drunk without being drunk.
This comes and goes. But lately it has been much worse. Causing me to almost faint if i dont get low to the ground.. Not long after that i started having chest pains which have been ongoing but there is nothing wrong with my heart after getting it all checked out. It feels like a sharp stabbing pain..

Then there is the headaches.. Which are terrible sometimes. So bad that i can't drive because my eyesight is effected. My doctor keeps giving me codine .. which i have been taking for 4 years now... And its doing nothing for the headaches. I have stopped taking it for months because i read that the painkiller itself can cause headaches in hope that they would stop.
They didn't.
About a year ago i started getting like sharp pin prick like pains on the side of my face. It comes and goes.
I feel sick a lot. Like i want to throw up but i don't. But its bad enough to effect my mood and make it hard to be a mum to my 3y.o.
Then there is the dizziness that can sometimes last for days... Where if i move my head too fast i almost fall over. My eye sight gets bad and i start seeing double of everything. Like everything is out of focus.
I wake up some mornings and it feels like my body has been hit by a truck. I can hardly walk and feel like im a 100 years old. This is happening more and more, Joint pain etc.

My doctor tells me that this is all in my head.. And its something that i just can't accept.
Yes. i suffer bad aniexty.. But any one would with these on going symptoms and no answers.
I feel like i keep getting brushed off like its nothing. Yet its making my life unlivable.
I have been getting the sensations that my body gets really heavy. Like my legs just want to stop working. This has happened a couple of times.

because all of this in constant, i have been suffering really bad depression.

All the blood tests come back the same. Everything is ok but my white blood cell count is always a little bit high. '

Im tired of being told that its all in my head.

And this is why i am trying to reach out here. Because i don't know what else to do.
THanks.
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Re: Looking for Answers......

Postby scarletrose » Sun Jul 26, 2015 11:12 am

Forgot to mention that my memory is now shit... I can't remember much of anything that has happened. If someone wants to meet , i have to write it down and put a reminder on my phone.
I can't concentrate on anything.. Can't even read a book.

This is ruining my life... :( :( :(
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Re: Looking for Answers......

Postby scarletrose » Sun Jul 26, 2015 11:24 am

Forgot the shortness of breath....

It feels like im not getting enough air. like there is something sitting on my chest.
It comes and goes. THe doc gave me an Inhaler.. but it does nothing.

lol. I am pretty sure that is the last thing... I think. . . .

:)
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Re: Looking for Answers......

Postby lyndacarol » Sun Jul 26, 2015 12:39 pm

Welcome to ThisIsMS, scarletrose. Your symptoms are common to many conditions. MS is one possible cause, but the diagnosis of MS can only be made after other more likely causes have been ruled out. There is no definitive test or image to prove MS.

Since your symptoms are also consistent with a B12 deficiency, please examine the following website: http://www.b12d.org/
and compare your symptoms to this questionnaire: http://www.pernicious-anaemia-society.o ... t-2013.pdf

Review The Pernicious Anaemia Society website , even if PA is not your specific problem (http://www.pernicious-anaemia-society.org/index.php), take a written list of your symptoms to discuss with your doctor and also discuss the possibility of vitamin B12 deficiency.

Do not take vitamin B supplements before any B12 testing is done, as this will skew the results.

If B12 is not the source of your problem, cross it off the list and move on to the next possibility. Thyroid? Celiac disease? Etc.

It is not "all in your head!" We wish you all the best, please let us know how it goes.
Last edited by lyndacarol on Sun Jul 26, 2015 12:48 pm, edited 1 time in total.
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Re: Looking for Answers......

Postby scarletrose » Sun Jul 26, 2015 12:47 pm

Thanks for you reply.

I have been tested for everything under the sun. Thyroid, check. B12, Check. Iron lvls, Check.

My doc did a full blood count in May and he said all the results were normal.

I don't even think he is trying anymore. My last visit was because of being so tired i felt sick. Could hardly keep my eyes open even after a full nights sleep.
And having to pee a lot... sometimes every ten minutes some days.
I have gone Gluten free, dairy free... Nothing changed.

I want to change docs but im so terrified of opening up to another doctor...

/sigh.. I think im too tired at the moment and can not think straight..

Again, thank you for your reply. :)
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Re: Looking for Answers......

Postby lyndacarol » Sun Jul 26, 2015 1:18 pm

scarletrose wrote:I have been tested for everything under the sun. Thyroid, check. B12, Check. Iron lvls, Check.

My doc did a full blood count in May and he said all the results were normal.

I don't even think he is trying anymore. My last visit was because of being so tired i felt sick. Could hardly keep my eyes open even after a full nights sleep.
And having to pee a lot... sometimes every ten minutes some days.
I have gone Gluten free, dairy free... Nothing changed.

I want to change docs but im so terrified of opening up to another doctor...

Since you have had a full blood count (FBC), ask your doctor if the MCV (mean corpuscular value) might be high and indicate that you have enlarged red blood cells. Enlarged red blood cells is a condition called "macrocytosis." It can be a sign of low B12 levels.

It may be difficult to change doctors, but if your current doctor has lost interest in being a "disease detective," I think you have no choice but to try someone new. Since you have a three-year-old child, it may be especially important to rule out B12 deficiency (B12 deficiency can run in families.) – anyone at any age can develop a B12 deficiency.

By the way, if your new doctor will start by screening for B12 deficiency, be aware that the standard, outdated "serum B12" alone is not adequate to discover a deficiency. Request a methylmalonic acid test AND a serum homocysteine test.

Be strong and have courage – I am sure you will find the answers to your symptoms.
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Re: Looking for Answers......

Postby scarletrose » Sun Jul 26, 2015 1:21 pm

ok. So i just got off the phone with the nurse at the Doctors office. I asked her to go through my last lot of blood tests etc.

My B12 is 661. Higher than normal. So i am not low whatsoever.

I asked her if anything else was even slightly high or low and she said no. Thyroid function normal. etc etc etc.

So i don't know what to do... I feel like if i go back to the doc he is just going to try and convince me that it is all in my head. . .
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Re: Looking for Answers......

Postby lyndacarol » Mon Jul 27, 2015 9:01 am

scarletrose, you can retrieve my private message (PM) to you by clicking on "new messages" in the upper left corner of this page.
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Re: Looking for Answers......

Postby IndyBill » Tue Feb 07, 2017 12:52 pm

Hello,

Were you able to get a correct diagnosis? I suffer from some of the same symptoms plus when I'm physically active I bend my head forward and it sends intense tingling through my body to my legs and feet.

IndyBill
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Re: Looking for Answers......

Postby jimmylegs » Tue Feb 07, 2017 1:02 pm

hi bill this is a fairly old topic; OP has not posted since 2015 so not sure you'll get a reply. if i had been following this thread at the time i would have noted several things which leap out at me. can you describe your symptoms, other than the apparent lhermitte's sign? i feel like the OP here did not describe lhermitte's so there are possibly different things in play. you may wish to start your own topic; up to you :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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