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Hi all, I have been told my my doctor and my neurologist they are looking for MS, when I asked them flat out. I am Claustrophobic and the MRI has been a issue though my insurance has finally agreed to a full sedation MRI and they are working on scheduling it, not sure how long it will take. Will be done with and without contrast and brain and spine (I believe, from what I read they are looking for lesions on the spine to confirm Primary Progress MS. Also because that is what my symptoms seem to fit.

First thing I noticed I could not turn left when I skied. (It requires to put weight on right) doctor few years back and they sent me to physical therapy cause they noticed a weakness on my right side.
Second went to eye doctor about a year or so later and I couldn't see her hand on lower left. This involved an Optical neurologist, some kind of other doctor that did field of vision test, and my first and so far only MRI (where I found out I was claustrophobic, they put something in my iv) MRI was normal, Optical neurologist said I had a eye stroke.

Third I just started being sick to my stomach all the time, kind of got the flu then it just turned into constant nausea, more doctors, the put a scope down me, then fed me nuclear eggs and just put my stomach in the machine (thank god only up to tummy) Said I had gastroparesis, they gave me some Medicine (Metoclopramide) worked for about 2 to 3 weeks and just stopped. I was just tired and nausea and doing things became slower and just couldn't do my job anymore so had to quit.

Fourth just noticed a tremor in my thumbs fingers but not very often maybe 2 times a month and does not last to long. And legs aches when I sleep and when I get up after sitting awhile walking is funny, noticing it seems to be getting worse.

Fifth just woke up one day with my eye sight funny and my ear hurting, after 4 or 5 trips to doctor nothing wrong with ear (pain also in cheek/jaw but feels mostly deep in ear), 2 trips to ER, because I was gonna tear my ear off they send me to a ear/nose/throat specialist and he said I had Atypical Trigeminal Neuralgia and put me on Gabapentin, which my my ear stop hurting but didn't stop the muffles that come off and on. And off for another field of vision and I lost my sight now I am up to lose of vision on left eye is 50% and they said I have optic neuritis (not sure if that is the same as an eye stroke)

Oh and then I have had my doctor test me few times for bladder infection and also my blood sugar because I have to keep going to bathroom, all night long to I only sleeping hour or two before I have to get up and use the bathroom ( probably another reason I am tired)

Tired well by the time I get up and dress I am ready to go back to bed, it just wears me out. I used to be able to go to work, go shopping after work, clean the house, cook dinner, do the laundry all in on day. Now I got my kids helping with the cooking and cleaning and housework divided by one thing a day. I was suppose to vacuum yesterday, but couldn't but my son did it for a box of pop tarts.

Memory, well I put this site in my bookmarks and put my user name and password on post it note on my computer or I would not be able to get back here. If I need to do something I have post it notes.

I do not seem to have relapsing-remitting just seem to be going downhill (which suggest Primary Progressive) from what I have read. I do sometimes seem to get really tired flu like symptoms and really tired and blood pressure shoot up right before something breaks in me.

I have had a cat scan was spot on cat scan that neurologist said could be a ms spot, neurologist also said in report he sent me to my doctor, that he noticed my gait was wide, I had some loss of sensation (which I didn't notice) and had my doctor take blood out of me for a bunch of tests (regular blood test all came back normal) also the blood tests that the neurologist wanted done all came back normal.

Another issue I have I also have learning disabilities and ADHD, both which affect the brain, not sure how those would work with ms, but I am guess I will probably have Atypical MS, I learned Atypical means not normal course for the disease.

P.S I am dyslexia, so if I spelled anything wrong please excuse me, I tried to look up everything.

Age is 48, (yes, women)usually I sound younger then I am, and married with four kids, two boys, two girls.

I thought it would be nice to talk to others while I wait for them to get my MRI in the works, it has to be done at hospital and a sedation, machine, hospital, etc all have to be able to do it that day. Hopefully wouldn't be long. I just gotten to the point I know something is wrong I want a name for it.

The two worst thing for me is this ear/face pain (specially when my ear is being stabbed)and being tired I have things I want to do and just can't get them done.

It's nice to meet everyone and sorry for the long post but figured I get it all out in one post

Cmj

Welcome to ThisIsMS, cmj123.

You are undiagnosed and have a slew of symptoms consistent with MS but also consistent with many other conditions. MS is a diagnosis of exclusion, made after other more likely conditions have been ruled out.

Since all your symptoms are also consistent with a vitamin B12 deficiency, I wonder if you have been screened for a deficiency in the "bunch of tests" – and when you say "(regular blood tests all came back normal)" I wonder if you have the actual number results. And in the "blood tests that the neurologist wanted done" I wonder if they included the initial testing (#1 serum B12 test, #2 serum folate test, #3 serum homocysteine test, and #4 serum methylmalonic acid test) for a B12 deficiency and what were the number results.

If a B12 deficiency has not been ruled out, you might consider discussing it with one of your doctors. Any person at any age can develop a B12 deficiency.

We are glad that you found us; it is always "nice to talk to others" and share experiences. We wish you all the best with your MRI. Claustrophobia in those machines is not at all unusual.

Yep I know the nero ran B12 looking for a deficiency also a bunch of other stuff I remember Lyme diseases and a few other ones, I think I pretty much been tested for everything. Even hospital ran blood tests, I don't remember all the tests he ran but remember B12 Lyme and some odd one that started with V cause nurse said that one they don't draw a lot of and she had to look it up. The nero guys also said the blood tests would rule out lupus? And no I didn't ask the doctor for the number results he just told me they all came back normal. Not sure what tests the Nero ran but those seem like they were there, there were a whole list of them and big words sorry not good at remembering them and it was a long list. I do know he was running them to rule out everything else though. Should I get the numbers? do I need to know them? I could get them from the dr or maybe they keep them on this online medical records thingy but I haven't tried to access it yet.

I got online to my medical records but they only have the long list of the blood test the hospital did, not the ones my doctor did or the nero did, should I list the ones the hospital did?

cmj123 wrote:Should I get the numbers? do I need to know them?

It's usually a good idea to get a copy of your test results for your own records. It makes it easier to get them to a different doctor should you need to at some point in the future. In addition, doctors and hospitals only keep records for so long. For example, I had an MRI last July, but my prior MRI results weren't available for comparison since they were done in 1999 and 2001.

In addition, it's possible that your test results came out "normal" but were at the low end of the range and may actually indicate deficiency. Vitamin B12 is a common example. The range for B12 is around 200-950 pg/mL. However, for a person with neurological symptoms it's best to be at 550 pg/mL or above. A value of 250 pg/mL would still be "within the range," but would actually be deficient. As such, it's good to know your test results.

Sigh I was just looking for a place to talk I have a feeling even though I already know when they look at my MRI they are gonna find lesions and confirm MS that its not gonna be easy for me. It's just to much trouble for me to go an hour drive to get copies of my blood tests that the neurologist did and get them on my computer to prove to you guys a B12 deficiency has been ruled out. Called him this morning to ask. (The fact that I am up to 3am to try to find medical records and calling my neurologist this morning is just tells me this board is gonna be adding stress not taking it away. I just wanted a place to talk I didn't know to talk here I needed to have all my medical records and blood tests available for you guys. Sorry I won't get a chance to know you guys.

cmj123 wrote:Sigh I was just looking for a place to talk I have a feeling even though I already know when they look at my MRI they are gonna find lesions and confirm MS that its not gonna be easy for me. It's just to much trouble for me to go an hour drive to get copies of my blood tests that the neurologist did and get them on my computer to prove to you guys a B12 deficiency has been ruled out. Called him this morning to ask. (The fact that I am up to 3am to try to find medical records and calling my neurologist this morning is just tells me this board is gonna be adding stress not taking it away. I just wanted a place to talk I didn't know to talk here I needed to have all my medical records and blood tests available for you guys. Sorry I won't get a chance to know you guys.

I apologize, cmj123, for misunderstanding your purpose in coming to ThisIsMS, "the world's leading forum on Multiple Sclerosis research, support, and knowledge," as stated in the descriptive banner at the top of this page. I misinterpreted your initial post in the "Undiagnosed" forum with its long list of symptoms as seeking input from similarly affected people and their caregivers, family, and friends.

It was not my intention to add to your stress; I certainly was not suggesting that you drive an hour to get copies of your blood tests! I wish you all the best.

cmj123 wrote:I just wanted a place to talk I didn't know to talk here I needed to have all my medical records and blood tests available for you guys.

You don't. It was just a suggestion. Almost all of my medical records from my diagnosis in 1999 are gone. It's frustrating when I go to doctors now. My suggestion was just to help you avoid this frustration.

I can also personally attest to the importance of getting your medical records. I was told by my first neurologist that the lumbar puncture that he ordered to be performed was "negative" for MS. Upon requesting my records and after months of uncertainty...meaning I had no clue as to what was causing all of my troubling symptoms...I myself read the report and it was clear that it was a "positive" result. I then had this confirmed by 2 MS specialists. This neuro also blotched my MRI. So..I guess my point is that things do get missed by doctors and I feel that we need to be diligent as patients to get our own records and do what we can to ensure that they are accurate at the very least. Again..this is JMO

I tell ya after my experience, I have looked over everything in my record...even the blood work...and if I have any doubt, I question. Needless to say my current neuro loves me