New here - Undiagnosed yet

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

Post by Xaleah » Mon Apr 14, 2014 4:51 pm

First off, Hi everyone.

A little about me. I am 32 years old, married mother of 3. In January I got a diagnosis of Syringomyelia in my T-spine, two focus', one from T3-T5 and the other from T7-T8, they are not very big, just 1.44 mm in diameter. I have not had a mri of my head or c-spine to find out if I have Chiari or any Syrinx's in my c-spine yet.

Anyway, I have a lot of symptoms that my doctor now thinks may possibly be MS. He has me referred to the Neurologist but I have not had the appointment come yet and he wants an MRI of my brain.

My body has been full of weird symptoms, and to be honest I have had some of these before in the past.

A few weeks ago I fell down the stairs twice within a few days and hurt my back, bruised and stuff. Then a few days after that I lost balance when going to the bathroom and fell and hit my head on the narrow strip of the door. Balance has been an issue for me for some time, getting worst sometimes. Its been happening off an on for a long time, but the past few weeks worst. I have a lot of stairs in my house, 12 steps from my basement to my first floor and then another 14 steps from my main floor to my upstairs where the bedrooms and bathroom is. There is 8 steps if I want to come in my main door instead of using the basement. I have issues walking up either set of these steps without stopping half way due to balance issues.

I really did not know much if anything about MS, but after finding out that they were going to be looking into it for me, I read a little information.

Symptom wise I definitely have the balance and dizziness portion of it. With regards to my bladder, I have issues peeing, I will begin peeing and then stop, but I still need to pee and I have to push to pee, then I will stop and have to push again, its like my bladder does not empty on its own. Also I could be sitting and have no need to pee but get up for something and then suddenly I have to pee and can hardly make it to the bathroom. I also wear panty liners (tmi) on a daily basis because of mild urine leaking.

I have really bad memory problems, terrible.

Just to include here I also have a diagnosis of Bipolar disorder, got the diagnosis about 2 years ago and it is most likely type 2, I do not loose touch with reality or hallucinate or anything like that, and for the most part my mania is hypomania.

There have been times when I have spoken where it has felt like I was speaking with a mouth full of cotton, and my words came out jumbled and whom ever I was speaking to had no idea what I was saying. This usually corrects itself pretty quick, but it may happen several times a day. The person whom I am talking to cannot understand me, but then I can correct my mistake after 30 seconds or so. Or there are times when I know what I want to say but I am unable to say it.

I have had difficulty swallowing, or really what feels like my body has forgotten how to swallow, but this does not happen very often. The first time this happened was actually a reaction to a new medication that I was taking. Since then it has happened on several occasions.

Fatigue, is bad at times. I have never felt this bad before. Its like I just cannot get through the day.

I have the electric shock sensation that goes down my T-spine. This was actually what lead to the mri of my t-spine and l-spine and getting my diagnosis of Syringomyelia.

I also have periods of time where I will wake up with both arms tingly, sleeping, pins and needles or just plain heavy feeling. This might happen several times a night for a day or two and then go away for a week or so and then return. But lately it seems to be happening a lot more. I also get similar feelings in my legs depending on what I am doing.

I have no idea if this could be related or not, but this past couple of weeks or so I have been having issues with floaters in my eyes and a lot of blurryness like I am looking through a fog.

Have definitely been having pain, Joints are affected, hips and knees and knuckles. Also my back, I have had pain in my back for years, some of which is caused by things in my spine, My L5 is fused to my sacrum so this causes pain in that area because I do not have the movement that I should have there.

A few days ago I lost hearing in my right ear, it was very short less then a minute, started with not being able to hear out of it, then a ringing sensation and then the sound started to come back.

Its all very hard because its not something I talk to people about, my husband and a couple of family members and close friends know, other then that I have decided to keep the information to myself until which time I either get a confirmed diagnosis or not.

Its nice to have found a place to talk.

As I said I do not have a diagnosis yet, but I just feel like being here and talking may help some with the things I am dealing with. I feel a bit overwhelmed.

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Re: New here - Undiagnosed yet

Post by lyndacarol » Tue Apr 15, 2014 6:08 am

Welcome to ThisIsMS, Xaleah .

In my opinion, and in the opinion of the authors of Could It Be B12? An Epidemic of Misdiagnoses, every person recently diagnosed with symptoms such as yours (even bipolar disorder seems to have a connection with B12) should be tested for a possible vitamin B12 deficiency. To fail to do so is downright negligence!
The feeling you describe in your arms and legs – tingling, "being asleep," "pins and needles," heaviness – is classic "peripheral neuropathy." Even in investigating the cause of peripheral neuropathy, the University of Chicago suggests the following:

http://peripheralneuropathycenter.uchic ... ndex.shtml

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:
Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
Hepatitis C and B
Please note that the first blood test the U of Chicago suggests is for vitamin B12. I hope one of your doctors has started with that test. There have been several malpractice cases won (for several million dollars each!) when doctors did not look for vitamin B 12 deficiencies and patients went on to develop irreversible neurologic damage.

You may also find the information in the following video useful: "Everything You Want Your Doctor to Know about Vitamin B12"

I highly recommend this 50-minute documentary from the filmmaker Elissa Leonard, featuring Sally Pacholok, RN, BSN & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).

@1:23 "The neurological manifestations well precede the hematological manifestations."

@1:46 "In 1948 scientists isolated a red crystalline pigment and named it vitamin B12. It is a primordial molecule responsible for the health of all the DNA in all our cells. The Framingham Offspring Study suggests 40% of Americans have suboptimal B12."

If you are found to have a vitamin B12 deficiency, it is easily treated with B12 supplementation (shots or lozenges). Some people have started improving in a matter of a few days or a few weeks. Watch the video, read the book – you will find all your symptoms (balance, dizziness, bladder issues, memory problems, bipolar disorder, "brain fog" – "times when I know what I want to say but I am unable to say it," difficulty swallowing (dysphasia), fatigue hearing loss/ringing in the ears, a.k.a. tinnitus, etc.).

We are glad that you found us. We are good listeners.

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Re: New here - Undiagnosed yet

Post by Xaleah » Thu Apr 17, 2014 4:41 pm

Thank you for the reply, I will be having a look at the video you posted.

I have not been tested for B12 problems yet. I have been referred to the neurologist anyway because of the syringomyelia diagnosis so I am assuming from there we will go with the other testing.

Hoping to get the appointment soon because every day it feels like my body is at war with itself and it is rather frustrating.

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Re: New here - Undiagnosed yet

Post by Xaleah » Thu May 01, 2014 3:36 pm

Just a quick update. Filled my family dr in on everything even the bladder issues which I was embarrassed to talk about because of my age. He picked up the phone right then and there and called the neurologist that he referred me to and explained everything to him, he has agreed to see me sooner. My family dr wanted me seen before I start loosing more and more of the function that I have.

He said that all of these symptoms that I am having could be all related to one thing, or they could be some what separate. I am hoping that we find out soon because I am sick and tired of it all. Not knowing is worst, I would rather just know one way or another.

My syringomyelia could be causing many of the symptoms but am unsure.

Had my B12 tested yesterday as well, got the result today and it was perfect so that is not an issue.

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Re: New here - Undiagnosed yet

Post by lyndacarol » Thu May 01, 2014 4:36 pm

Xaleah wrote:Had my B12 tested yesterday as well, got the result today and it was perfect so that is not an issue.
I hope that you requested a copy of the actual test results (the numbers!) for your own file. The serum B12 test alone is not usually adequate to determine if a person has a B12 deficiency; usually, a blood test for the homocysteine level and a urinary test of methylmalonic acid are also done (those levels will be high if there is a B12 deficiency). I wonder what the lab and your doctor consider to be "perfect" for the B12. According to the book, Could It Be B12? An Epidemic of Misdiagnoses, (page 15) the authors identify a Serum B12 Gray Zone of 200-450 pg/mL and say that they "advocate B12 treatment in all symptomatic patients with serum B12 below 450 pg/mL."

By the way, kudos to your family doctor for calling the neurologist and getting you in to see him sooner.

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Re: New here - Undiagnosed yet

Post by Xaleah » Fri May 02, 2014 9:16 am

I never requested a copy of the test results, I am in Canada and that's not usually done here, they keep things in a file. But it is my understanding that I can get a copy of the entire file but I have to pay, its so much for the file up to a certain amount of pages, and so much for each page after or something along those lines.

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Re: New here - Undiagnosed yet

Post by Wondering » Wed May 07, 2014 12:16 pm

Hi Xaleah,

Sorry you are having troubles. Where in Canada are you? Feel free to PM me


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Re: New here - Undiagnosed yet

Post by jimmylegs » Wed May 07, 2014 12:52 pm

i'm in canada too and if the doc's office is electronic they can filter out only test results so you don't have to pay for so many pages. my doc is lenient and to my recollection i still have not paid for my own copy of any results, with the exception of my MRI CDs.
serum vit b12 is an established test for differential dx of ms so it's possible they'll have that on file. serum 25(OH)vitD3 is popular lately too, although not necessarily covered by insurance depending where you're located. i also wouldn't be surprised if you found a serum ferritin test on your record. also useful info.
there's a list of other essential nutrient tests that they are far less likely to have run. here's a list of tests and targets representing levels seen on average in healthy controls
serum nutrient levels seen in average healthy controls:
serum vitamin B12: aim for at least 500 pg/mL or 370 pmol/L.
serum vitamin 25(OH)vitaminD3: aim for at least 100 nmol/L (40 ng/mL). preferably 125-150 nmol/L (56-60 ng/mL). ...
serum zinc: aim for 18.2-18.4 umol/L. (~120 ug/dL)
serum magnesium: aim for .95-1.1 mmol/L. (or 2.3-2.7 mg/dL)
serum copper: aim for 17.3-18 umol/L (or 100-114 ug/dL). ...

ms patients are typically low normal, and distinctly worse off than healthy controls. so having your own results lets you tease out whether your 'normal' status matches the ms patient profile, vs the healthy profile.
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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