This Is MS Multiple Sclerosis Knowledge & Support Community

I know this is long, so thank you so much for taking the time to read it!

Hi! I'm Melissa and 38 years old with 4 rotten boys! They are 17, 16, 14 and 11. I only gave birth to the 11 and 14 year old. The other two are my step-sons. That's just a little about me.

About 1 year ago I started having bladder control problems. Every single time I get out of the bathtub or shower, I pee all over the floor. The disturbing part is that I cannot feel it at all. I only notice if it hits my leg. I do know that's it's urine and not water from the tub due to the color. I will continue to pee on myself for up to an hour after that. While I'm in the tub, urine continuously leaks out, and I can't stop it. I had a bladder sling put in about 7 years ago, so I assumed it had broken. They did all kinds of tests, and it is fine. The urologist could not find anything urologically related wrong with me.

About 3 months ago I started having trouble going "#2". I can't feel my muscles down there enough to push...I know, tmi! Sorry! I haven't lost all bowel control. I sometimes just have to sit there forever til I go from gravity. It has caused severe constipation to where I've had 5 bowel impactions which is excrutiatingly painful. Anyone that's had one would agree.

I then went to my orthopedic doctor that I've seen for 12 years and is also a sort of friend because I used to work there. I have 5 herniated discs in my back and osteoarthritis, so that's why I see him. He said that the herniated discs would not cause that to happen. He then asked me some more questions and informed me that his sister had the exact same thing happen, and it was MS. He said that he would do 5 hours worth of MRIs on me and be able to tell. He did hers. So of course I'm a nervous wreck not knowing. It's taking a long time to get done b/c I'm severely claustrophobic, and I've freaked out every time in the MRI machine. It's an open MRI also. They've given me valium to take and try again next week.

Also, I was tested for cauda equina syndrome, and it's not that thank God!

Another thing that's I started having is cognitive problems. I can't remember anything. It's way beyond normal memory loss. I assumed that was related to menopause. I've been in menopause for 10 yrs due to a hysterectomy. I do take hormones though. I just wanted to add that symptom in case it means anything important.

Another symptom I've had is that about 4 months ago I was diagnosed with what my doctor thought was posttherpetic neuralgia. That's the pain you have after shingles. I had had a rash that just had a couple of spots on my panty line for which I never went to the doctor for. I also had shooting pain going from my left upper leg and into a specific spot on my foot. So the doctor assumed it was shingles. I'm wondering now if that's it. It has since stopped, although I get a tingle of it every now and then.

The other symptom I can think of is that about 3 months ago I starting having sudden and severe depression. The thing is that I have absolutely nothing to be depressed about. I'm very happy and it just hit out of the blue. I just started taking meds for it. My husband was deployed about 1 month ago, but I'm very used to that. Plus, I was depressed before he left.

I've also been extremely tired for the last year or so. I was diagnosed over 25 years ago (at 12 yrs old) with Chronic Fatigue Syndrome, but I haven't had a problem with that in a long time.

Oh, and one other thing that may not be related. For the last month or so I've been having very vivid realistic dreams. I wake up and cannot tell if I dreamed it or if it really happened. It's always just typical day to day stuff. For example, I sell stuff on Poshmark right now. I had a dream one night that I sold a pair of boots for $150 and told the woman that I'd ship them to her in the morning. So when I woke up, I packed them up. I went to print off the label, and it showed that I never sold them. I've had things like this happen MANY times. I have full conversations with people in my dreams and talk to the the next day, and they have no clue what I'm talking about. It's making me question my sanity.

I've also had some odd itching lately. I went through a stage about a year ago where only my palms and soles itched. It stopped. Then every night now, I get itching all over my body and almost claw myself to death. Benedryl makes it worse.

I do not have any problems with speech, balance or changes in eyesight. My eyesight is already horrible, so I'm not sure I'd notice unless it was severe.

I also have had symptoms of Restless Leg Syndrome for about 2 years or more. It feels like bugs are crawling inside my body when I lay down. It's in my arms also though.

Does this sound familiar in MS? Or could it be something else? I've been reading the internet for other diseases/syndromes that may match this. I'm grasping at anything because I don't want it to be MS.

[img][IMG]http://i46.photobucket.com/albums/f129/ ... 074840.jpg[/img][/img][/size][/size]

Welcome to ThisIsMS, Melissa.

The symptoms that you shared with us are common to many conditions, including MS. But MS is a diagnosis of exclusion – other more likely possibilities need to be ruled out first.

I think a possible vitamin B12 deficiency should be the first area to be investigated. I have read that an estimated 40% of the American population has B12 deficiency. Any person at any age (even at 12 years old) can develop a B12 deficiency. (The following info may not apply to you, but oral birth control pills interfere with B12 absorption and can contribute to a deficiency.)

Compare your symptoms to some (this is a partial list) that can be attributed to a B12 deficiency (It is not necessary to have ALL these symptoms in order to qualify for a B12 deficiency):

Signs and Symptoms of B12 Deficiency:
Tingling/Numbness ("crawling bugs" sensation)
Sore Mouth or Tongue
Fatigue
Anxiety
Irritability
Depression
Weakness
Abnormal Gait
Mental Impairment (confusion, forgetfulness)
Visual Disturbances
Migraine
Orthostatic Intolerance
Chest Pain
Tachycardia
Difficulty Breathing
Edema
Elevated Homocysteine
Elevated MMA
Stomach and G.I. Problems
Blood Abnormalities
Neurological Lesions (maybe found with MRI)
Limb Movement Disorders (Restless Legs)
Psychosis
Uro-genital problems (bladder and bowel problems)

I hope your PCP, neurologist, or orthopedic doctor has ordered the initial testing to rule out a possible B12 deficiency. This should include a #1 serum B12 test, #2 serum folate test, #3 serum homocysteine test, and #4 serum (or urinary) methylmalonic acid test. Some doctors are now including a serum HoloTranscobalamin test as well. Do not take vitamin B supplements before testing as this will skew test results and make them unreliable.

If you are found to have a B12 deficiency, it is easily and inexpensively treated; caught early, symptoms are often reversible.

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Dr. Jeffrey J. Stuart, D.O. (This may be available at your library.): http://b12awareness.org/could-it-be-b12 ... diagnoses/
If a B12 deficiency can be ruled out, there is a long list of other possibilities to be investigated – other nutrient deficiencies, gluten sensitivity, thyroid or liver problems, etc.

Thank you so much for this information! I had a gastric bypass 17 months ago and lost 130 pounds. Due to the gastric bypass, I have to take B12 shots every month and they check my levels every other month or so. So far it's been fine. Now they didn't go in depth with all those other tests. I'll take this to my doctor and ask him if we should do it. I'm having my MRIs next week IF I don't freak out in the machine due to claustrophobia. This will be the 5th time I've tried it. It's so frustrating. This time they're having me take valium prior to the test. Fingers crossed!
But like I said, I'm gonna take this to my doctor. I'll print if off. By the way, out of those symptoms (besides the ones you highlighted, I also have:
Sore tongue (from Geographic Tongue disorder)
Irritability
Orthostatic Intolerance (bp drops every time I stand up, and I have to hold on to something til it passes).
Headaches (I wouldn't say they're migraines though. I used to have those)

lyndacarol wrote:Welcome to ThisIsMS, Melissa.

The symptoms that you shared with us are common to many conditions, including MS. But MS is a diagnosis of exclusion – other more likely possibilities need to be ruled out first.

I think a possible vitamin B12 deficiency should be the first area to be investigated. I have read that an estimated 40% of the American population has B12 deficiency. Any person at any age (even at 12 years old) can develop a B12 deficiency. (The following info may not apply to you, but oral birth control pills interfere with B12 absorption and can contribute to a deficiency.)

Compare your symptoms to some (this is a partial list) that can be attributed to a B12 deficiency (It is not necessary to have ALL these symptoms in order to qualify for a B12 deficiency):

Signs and Symptoms of B12 Deficiency:
Tingling/Numbness ("crawling bugs" sensation)
Sore Mouth or Tongue
Fatigue
Anxiety
Irritability
Depression
Weakness
Abnormal Gait
Mental Impairment (confusion, forgetfulness)
Visual Disturbances
Migraine
Orthostatic Intolerance
Chest Pain
Tachycardia
Difficulty Breathing
Edema
Elevated Homocysteine
Elevated MMA
Stomach and G.I. Problems
Blood Abnormalities
Neurological Lesions (maybe found with MRI)
Limb Movement Disorders (Restless Legs)
Psychosis
Uro-genital problems (bladder and bowel problems)

I hope your PCP, neurologist, or orthopedic doctor has ordered the initial testing to rule out a possible B12 deficiency. This should include a #1 serum B12 test, #2 serum folate test, #3 serum homocysteine test, and #4 serum (or urinary) methylmalonic acid test. Some doctors are now including a serum HoloTranscobalamin test as well. Do not take vitamin B supplements before testing as this will skew test results and make them unreliable.

If you are found to have a B12 deficiency, it is easily and inexpensively treated; caught early, symptoms are often reversible.

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Dr. Jeffrey J. Stuart, D.O. (This may be available at your library.): http://b12awareness.org/could-it-be-b12 ... diagnoses/
If a B12 deficiency can be ruled out, there is a long list of other possibilities to be investigated – other nutrient deficiencies, gluten sensitivity, thyroid or liver problems, etc.

People who have had a gastric bypass are at greater risk of developing a B12 deficiency. The absorption of B12 is a complicated pathway and substances necessary for the absorption are made in the cells in the lining of the stomach.

In the US the B12 shots given in doctors' offices are cyanocobalamin (This is the cheapest form of B12, but is not readily absorbed by the body; it must be decyanated by the body first and converted to the active coenzymes.). Methylcobalamin (a.k.a. methyl B12) is one of two active coenzymes that are the only forms the body can use.

Methylcobalamin is available for injection from a compounding pharmacy. It is also available as a sublingual (under the tongue) lozenge, but does not seem to be effective for every B12-deficient person.

You say that your blood levels of B12 are checked every other month and have been fine so far. There is controversy about the US labs' standard ranges of "fine" or "normal" – according to the book, Could It Be B12?, on page 11:

There is much controversy as to what constitutes a normal result for this test [serum vitamin B12 test]. Because of this controversy, this test is often used in conjunction with other markers of B12 deficiency (MMA, Hcy, and more recently the HoloTc).

… We believe that the "normal" serum B12 threshold needs to be raised from 200 pg/mL to at least 450 pg/mL because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/mL.

At this time, we believe normal serum B12 levels should be greater than 550 pg/mL.…

We commonly see patients with clinical signs of B12 deficiency who are not being tested. Others who are being tested are not being treated because their serum B12 falls in the gray zone [between 200 pg/mL and 450 pg/mL]. This error results in delayed diagnosis and an increased incidence of injury.

Ask for the actual numbers (or better yet, request your own copy of your test results) and compare your numbers to the authors' recommendation of at least 550 pg/mL. These authors even suggest that the B12 level should be at 1000 pg/mL or more if a patient presents with neurologic symptoms, such as yours.


By the way, I have had several MRIs and because I don't know if I'm claustrophobic (and don't want to take the chance that I am), I close my eyes when I am lying down outside the machine. I tell the technician that I will not open them again until the test is over and I am brought out of the machine again. AND THEN I KEEP MY EYES CLOSED! During the test I try to visualize every house, every street, every landmark that I saw as a child along the way to my grandparents' farm. If the test is not over by the time I have "reached the farm," I visualize walking around their house or the barn… I JUST DON'T OPEN MY EYES YET. This works for me; I'm sure you will find your way to cope with the MRI, too. I KNOW you can do it! A woman who handles 4 boys can handle 'most anything!

mswanson502 wrote: I then went to my orthopedic doctor that I've seen for 12 years and is also a sort of friend because I used to work there. I have 5 herniated discs in my back and osteoarthritis, so that's why I see him. He said that the herniated discs would not cause that to happen. He then asked me some more questions and informed me that his sister had the exact same thing happen, and it was MS.

He said that he would do 5 hours worth of MRIs on me and be able to tell.

He did hers. So of course I'm a nervous wreck not knowing. It's taking a long time to get done b/c I'm severely claustrophobic, and I've freaked out every time in the MRI machine. It's an open MRI also. They've given me valium to take and try again next week.

Hi Melissa, and welcome! I just went through your original post and broke up the big blocks of type to make it easier for me to read and answer. Many here have vision problems and it might help some others, too.

It sounds like you have many different issues going on -- even ones already diagnosed. Your doctor has already noted that there's a possibility of an MS diagnosis as well, and it sounds like he's on top of that. The herniated discs may be a cause of some of your miscellaneous issues, however. My neurologist has already noted that pretty much all of my own current leg problems are likely due to a herniated disc and NOT from my MS at all.

The most important test will be the MRIs, however, so I encourage you to go through with them. I liked the MRI hints from lyndacarol and I think I'll use that approach myself next time! At my last couple of MRIs, I had to cover my face with a cloth to make sure I didn't slip and open my eyes. As long as I could keep my eyes closed and didn't look at the machine, I could handle it, and the type of visualizations that lyndacarol uses should make it even easier for me.

I have a question about the "5 hours worth of MRIs" you mentioned, though. Brain and C-spine MRIs only take a small fraction of that time. Even if they decide to do additional ones of the Thoracic & Lumbar spine, it shouldn't take nearly as long as 5 hours, and they would likely pull you out between each one.

You should ask your orthopedist again so you that at least you don't worry about the length of time! The valium should be a big help as well. Good luck! We know you can do it!

Hi Melissa,

There a number of things to look at, some of which are mentioned above. Your long history of tiredness and the geographic tongue suggest to me that you may have a problem with excess peroxynitrite. You may find this post too longwinded (http://www.thisisms.com/forum/regimens- ... 24019.html ) but have a look anyway. Don't get hung up on the detail. Have a look at the steps to try under "what I would do if just diagnosed". I think you could benefit from being checked for Epstein-Barr virus and following some of the suggestions in the post. Your bladder problems may not be helped but the tiredness may be relieved.

Regards

They told me that sometimes they can get it done in less than 5 hours, but sometimes it does take that long. All I know is that they're doing some without contrast and some with contrast.
As far as the claustrophobia, I start hyperventilating before they even put me in the machine. The one they have is just weird. I really can't explain it, but you literally have about 1 inch between your nose and the pane above you. I could feel my breath coming back and hitting me in the face because it was so close, if that makes sense. It was the 2nd time that I hyperventilated before they put me in there, so she stopped and said, "You need sedatives bad!" lol
So, Monday and Wednesday we're gonna try again. If it doesn't work, I'm gonna have to go somewhere else to do it that maybe has a different machine with more room. It's the weirdest thing. My claustrophobia gets worse every month or so. I won't go into all of that, but it's ridiculous. So, I'm already freaking out about going Monday. I've taken Valium in the past, and it didn't work for me. We'll see.
Thank you for the support!!

euphoniaa wrote:

mswanson502 wrote: I then went to my orthopedic doctor that I've seen for 12 years and is also a sort of friend because I used to work there. I have 5 herniated discs in my back and osteoarthritis, so that's why I see him. He said that the herniated discs would not cause that to happen. He then asked me some more questions and informed me that his sister had the exact same thing happen, and it was MS.

He said that he would do 5 hours worth of MRIs on me and be able to tell.

He did hers. So of course I'm a nervous wreck not knowing. It's taking a long time to get done b/c I'm severely claustrophobic, and I've freaked out every time in the MRI machine. It's an open MRI also. They've given me valium to take and try again next week.

Hi Melissa, and welcome! I just went through your original post and broke up the big blocks of type to make it easier for me to read and answer. Many here have vision problems and it might help some others, too.

It sounds like you have many different issues going on -- even ones already diagnosed. Your doctor has already noted that there's a possibility of an MS diagnosis as well, and it sounds like he's on top of that. The herniated discs may be a cause of some of your miscellaneous issues, however. My neurologist has already noted that pretty much all of my own current leg problems are likely due to a herniated disc and NOT from my MS at all.

The most important test will be the MRIs, however, so I encourage you to go through with them. I liked the MRI hints from lyndacarol and I think I'll use that approach myself next time! At my last couple of MRIs, I had to cover my face with a cloth to make sure I didn't slip and open my eyes. As long as I could keep my eyes closed and didn't look at the machine, I could handle it, and the type of visualizations that lyndacarol uses should make it even easier for me.

I have a question about the "5 hours worth of MRIs" you mentioned, though. Brain and C-spine MRIs only take a small fraction of that time. Even if they decide to do additional ones of the Thoracic & Lumbar spine, it shouldn't take nearly as long as 5 hours, and they would likely pull you out between each one.

You should ask your orthopedist again so you that at least you don't worry about the length of time! The valium should be a big help as well. Good luck! We know you can do it!

Thank you! I will definitely go read it.

Scott1 wrote:Hi Melissa,

There a number of things to look at, some of which are mentioned above. Your long history of tiredness and the geographic tongue suggest to me that you may have a problem with excess peroxynitrite. You may find this post too longwinded (http://www.thisisms.com/forum/regimens- ... 24019.html ) but have a look anyway. Don't get hung up on the detail. Have a look at the steps to try under "what I would do if just diagnosed". I think you could benefit from being checked for Epstein-Barr virus and following some of the suggestions in the post. Your bladder problems may not be helped but the tiredness may be relieved.

Regards

I actually do have the numbers somewhere. I had a printed sheet but not sure what I did with it. I'll have to check on that. Thank you for all the helpful info! I posted this to another poster below, but I wanted you to see it also.

As far as the claustrophobia, I start hyperventilating before they even put me in the machine. The one they have is just weird. I really can't explain it, but you literally have about 1 inch between your nose and the panel above you. I could feel my breath coming back and hitting me in the face because it was so close, if that makes sense. It was the 2nd time that I hyperventilated before they put me in there, so she stopped and said, "You need sedatives bad!" lol
So, Monday and Wednesday we're gonna try again. If it doesn't work, I'm gonna have to go somewhere else to do it that maybe has a different machine with more room. It's the weirdest thing. My claustrophobia gets worse every month or so. I won't go into all of that, but it's ridiculous. So, I'm already freaking out about going Monday. I've taken Valium in the past, and it didn't work for me. We'll see.
Thank you for the support!!

lyndacarol wrote:People who have had a gastric bypass are at greater risk of developing a B12 deficiency. The absorption of B12 is a complicated pathway and substances necessary for the absorption are made in the cells in the lining of the stomach.

In the US the B12 shots given in doctors' offices are cyanocobalamin (This is the cheapest form of B12, but is not readily absorbed by the body; it must be decyanated by the body first and converted to the active coenzymes.). Methylcobalamin (a.k.a. methyl B12) is one of two active coenzymes that are the only forms the body can use.

Methylcobalamin is available for injection from a compounding pharmacy. It is also available as a sublingual (under the tongue) lozenge, but does not seem to be effective for every B12-deficient person.

You say that your blood levels of B12 are checked every other month and have been fine so far. There is controversy about the US labs' standard ranges of "fine" or "normal" – according to the book, Could It Be B12?, on page 11:

There is much controversy as to what constitutes a normal result for this test [serum vitamin B12 test]. Because of this controversy, this test is often used in conjunction with other markers of B12 deficiency (MMA, Hcy, and more recently the HoloTc).

… We believe that the "normal" serum B12 threshold needs to be raised from 200 pg/mL to at least 450 pg/mL because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/mL.

At this time, we believe normal serum B12 levels should be greater than 550 pg/mL.…

We commonly see patients with clinical signs of B12 deficiency who are not being tested. Others who are being tested are not being treated because their serum B12 falls in the gray zone [between 200 pg/mL and 450 pg/mL]. This error results in delayed diagnosis and an increased incidence of injury.

Ask for the actual numbers (or better yet, request your own copy of your test results) and compare your numbers to the authors' recommendation of at least 550 pg/mL. These authors even suggest that the B12 level should be at 1000 pg/mL or more if a patient presents with neurologic symptoms, such as yours.


By the way, I have had several MRIs and because I don't know if I'm claustrophobic (and don't want to take the chance that I am), I close my eyes when I am lying down outside the machine. I tell the technician that I will not open them again until the test is over and I am brought out of the machine again. AND THEN I KEEP MY EYES CLOSED! During the test I try to visualize every house, every street, every landmark that I saw as a child along the way to my grandparents' farm. If the test is not over by the time I have "reached the farm," I visualize walking around their house or the barn… I JUST DON'T OPEN MY EYES YET. This works for me; I'm sure you will find your way to cope with the MRI, too. I KNOW you can do it! A woman who handles 4 boys can handle 'most anything!

There are "stand up" mri machines and open machines.

I am the same way as you and can NOT go into a regular machine. I get it done at a place called stand up mri. You sit normally on a chair that gets pulled into the machine. It is a tight fit but everything is open and you are sitting upright. They have a TV in front of it to watch, last time I watched a college basketball game to help pass the time. It is so so so sosososososo much easier!

Look into that if you cant do the regular ones.

best of luck,

Chris

Youarethecure wrote:There are "stand up" mri machines and open machines.

I am the same way as you and can NOT go into a regular machine. I get it done at a place called stand up mri. You sit normally on a chair that gets pulled into the machine. It is a tight fit but everything is open and you are sitting upright. They have a TV in front of it to watch, last time I watched a college basketball game to help pass the time. It is so so so sosososososo much easier!

Look into that if you cant do the regular ones.

best of luck,

Chris

That's cool! I've never heard of those. I'll have to see if anyone around here has one. I did do my MRI Monday and today though. The valium worked great! I had a stronger dose I guess.

Thank you everyone for your support. I'm reading about all the things y'all have mentioned.
I wanted to update you that I did get the MRIs done this Monday and Wednesday. The valium they gave me worked great. It was pretty creepy what they had to do though. Not only did I get put into a machine that almost touched my nose, but they had to strap my head down to the table, put a cage over my chest and a cage over my head. I had them put a towel over my eyes so that I had no idea those contraptions were there. I didn't like my head being strapped to the table for sure. They also had to strap my right arm to the table once they did the contrast. If I wouldn't have taken the valium, I would have torn that machine up, lol!
Anyway, my follow up appointment to get the results is Wednesday, Nov. 12th. Fingers crossed!

Best of luck and I hope the best for you.

Don't forget, no matter what it is there are things to do and you CAN handle it.

Well, I got my test results today. Unfortunately, I do have MS. I'm not letting it get me down though. One thing my dr couldn't explain is why there were only lesions found on my brain and nowhere else. He's sending me to a neurologist though. Is there any significance to only a brain lesion?

mswanson502 wrote:Well, I got my test results today. Unfortunately, I do have MS. I'm not letting it get me down though. One thing my dr couldn't explain is why there were only lesions found on my brain and nowhere else. He's sending me to a neurologist though. Is there any significance to only a brain lesion?

Hi again, Melissa. I'm sorry you got the diagnosis of MS, but I can assure it's not the end of a thoroughly enjoyable life! I've likely had MS for over 40 years now.

I notice that you've aksed this same specific question on another thread and received several answers, but I'll chime in, too: It is VERY common to have only brain lesions in MS. In fact, I think they may be more common than spinal lesions. Some posters note that their doctors don't even bother with spinal MRIs on the first try.

My first MRIs -- of the brain & C-spine (Cervical spine) -- showed a brain full of "classic" MS lesions but none on the spine. Subsequent brain & C-spine MRIs showed the same. Since then I've also had MRIs done of my Thoracic spine and Lumbar spine -- NO MS lesions. However, my spinal MRIs show enough general age-related damage to account for many of my problems (per my neuro).

Good luck!