Could it be MS? (Early Signs Questions)

[jedelolu]

Hi all,

I know that none of you can properly diagnose me, but I figured that I would throw out what's been going on with me and see if anyone can relate.

I first started having symptoms a year ago that no one has been able to figure out. I have had an MRI on my brain, neck, and spine, and according to my neurologist there were no lesions to speak of. However, I am now wondering whether I may have received a false negative due to new symptoms. The list is as follows:

1. Pain around my chest (almost like an inflammation of the rib joints that causes constant burning pain)
2. Numbness in my arm, hands, legs, feet, and once in my face (these persisted constantly for months, went away for awhile, and now come back intermittently)
3. Brain vibrations (it literally feels like my brain is vibrating, and lasts anywhere from 2-10 seconds)
4. Trouble swallowing (I just developed this a week ago and I am still having trouble with it)

I am diagnosed with an anxiety disorder, and my doctors have blamed all of these symptoms on anxiety. However, given the oddities of the brain vibrations and the difficulty swallowing, I can't help but think that MS may have just been missed the last time I had an MRI. I am still very young (25) so I'm wondering if it's easy to miss an MS diagnosis when it is in the early stages.

Can anyone relate to these symptoms? Does this sound like the beginning stages of MS to you?

[gekco789]

I am a 32 year old female. Symptoms started about a year and a half ago. I first had pain in my right flank side and lower right back. The pain was so bad that I was placed in the hospital. I was told that it was some sort of muscular skeleton issue. Several months later I was still having problems and family doctor thought it was a nerve problem so I was placed on Gabapentin.

Several months later my face began to hurt, with numbness, tingling, and feeling like it was swollen but on the inside of by body. At times it hurts to smile.


Several months after that my hands, fingers, toes, and feet, and chest began to feel the same way my face felt.

Then several months after that I started having problems walking my feet would go numb or feel like stone. I have fallen down at least three times in the last 9 months.

At times I feel really stiff and it is hard to get up and down. When my pain gets really bad my body starts to shake. I do not have seizures.

I have also had really bad headaches with eye pain that feels like pressure behind my eyes.

At times the pain is so bad in my chest/flank area that I do not want to be touched or to be hugged.

I am always tired and never seem to have any energy.

The problem with my symptoms is that they vary from day to day. Some days I have three or four things on my body that hurt other days it is just one, and then I have days were I am totally fine.

I take medication for anxiety, underactive thyroid, PCOS (polycystic ovarian syndrome (cysts), gabapentin for the pain, over the counter allergy medication, B12, Vitamin D, cranberry pills,medication for spasmatic colon, inhaler for asthma, and cream for eczema. I am allergic to Zoloft, allegra, Cipro, and amoxicillin.

I have had MRI’s/CT scan done on my brain and all of my spine which was normal; blood test for diabetes, b12/D (which were low so now taking the vitamins), celiac disease, Lupus, Sjogrens, Lyme Disease. I have had several nerve test done which were normal and had a nerve biopsy on my left ankle and left hip area and that was normal.

I have seen my primary doctor and a neurologist and no one seems to know what is going on with me.

Please Help! I am at my wits end!!!!

[jimmylegs]

what an unpleasant sounding list!

so no referral to a nutritionist as yet, i presume?

glad to hear you have b12 and d3 results. the problem with taking single tests and getting single results and taking single corrective actions is that your body is a complex system involving endless combinations of interactions between essential nutrients and body processes.

you've provided a lot of great info on symptoms, supplements, and meds. follow up question: what specific forms of d3 and b12 are you taking, and at what doses daily?

now i would like to inquire about your daily routine regarding food and fluids. what do breakfast, lunch, dinner and snacks look like? what type and volume of fluids do you consume regularly?

looking forward to your reply

[gekco789]

I am taking b12 oral pill 1000 Mcg timed released vitaimin and D3 oral pill 1000 IU. I normally have a granola bar for breakbast, lunch at times I will have yougurt,orange, and or another garnola bar (most of the times lunch is a snack rather than a meal) and dinner is usually meat, fruit, vegatables, and some bread. I usually drink flavored water but at times will drink sprite. As for volume probably not enough in a day probably 20 oz. a day. I normally have to remind myself to drink more. I don't drink caffine. I have been trying to work on eating better and drink more as well as exercise. Exercise is probably the harder one because if I am in pain you can forget it.

[gekco789]

I also found out that hot baths make the tingling, numbness, and pain get worse so I am not sure if heat is a trigger or if any of this could be important or not. Just trying to keep everything in the its possible stage because I don't want to miss anything when I speak to my doctor so that they have the whole picture in making some sort of diagnosis.

[gekco789]

All of these blood test and functions have been checked:

Vitamin B12 and folate levels
kidney functions
Vasculitis evaluation
fasting blood insulin test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease (I think this is VERY important, as well as a mannitol-lactulose test for Intestinal Permeability.)
Lyme disease

I think the only things I have left is Fybromyalia, MS, Lupus - but who knows I am one of those people who go through the ringer before anything comes back positive or the doctor know anything. I had a gallbladder problem for over a year and was in lots of pain years ago and I told the doctor it was my gallbladder but I had to beg to have them take it out. Sure enough I was right. Go figure.

[jimmylegs]

super busy will reply soon

[gekco789]

It seems that hot showers and baths seem to make the symptoms worse. I heard a story not sure if it is true or not that in the past MS was diagnoised by putting someone in a hot bath to see if there symptoms got worse. Is this true? My legs this moring feel heavy and like stone. The good news is I am being more careful when I walk so that I don't fall down. There is also a concern because there is a leak in one of my bathrooms and it has caused some mold but not sure if mold would cause any of these symptoms. I am allergic to mold but still again not sure if that would cause all of these symptoms. Hopefully everyone has a good day today!!!

[NHE]

It seems that hot showers and baths seem to make the symptoms worse. I heard a story not sure if it is true or not that in the past MS was diagnoised by putting someone in a hot bath to see if their symptoms got worse. Is this true?

Yes. When I had optic neuritis I found that taking a hot shower would cause my vision to temporarily cloud over until I cooled back down.

[gekco789]

Well I did what the doctor told me to do. I took the vitamin B-12 1000 mcgs once a month and did not make any of my symptoms better. At this point have been moved from 75 mlgs twice a day on Lyrica to 150 mlgs twice a day for the pain. This to me just feels like a band-aid placed on a bullet hole; it does not really tell me what is going on with me. Frustration settling in for now. Not sure what to think anymore. I guess the strangest thing is when my face tingles, gets numb, and hurts. The other strange symptoms is that my pain can be on both sides of my body.

I have already been to two neurologist and my primary doctor but still no clue to what is going on. Any insight or advise is welcome at this point because I got nothing to loose only new points of view or possible that I have not had to gain.

[gekco789]

I have also had a small fiber nerve biopsy done and that came back normal. I have also been having problems with seeing things blurry and have to re-focus on things a lot. My eye sight was recently checked and nothing was wrong with it. I have started swimming for exercise but even that does not help at times and I can't always do it when I feel really bad. Trying to find something that will make sense of all the symptoms I am having.

[lyndacarol]

Well I did what the doctor told me to do. I took the vitamin B-12 1000 mcgs once a month and did not make any of my symptoms better. At this point have been moved from 75 mlgs twice a day on Lyrica to 150 mlgs twice a day for the pain. This to me just feels like a band-aid placed on a bullet hole; it does not really tell me what is going on with me. Frustration settling in for now. Not sure what to think anymore. I guess the strangest thing is when my face tingles, gets numb, and hurts. The other strange symptoms is that my pain can be on both sides of my body.

I have already been to two neurologist and my primary doctor but still no clue to what is going on. Any insight or advise is welcome at this point because I got nothing to loose only new points of view or possible that I have not had to gain.

If you have supplemented with an oral vitamin B12 (ideally, in the methylcobalamin form) and still have a B12 level below 550 pg/L and have seen no change in your symptoms, it may be that your body cannot absorb it in that oral form of supplementation.

Discuss the possibility of trying B12 injections with your primary care doctor or your neurologists. Ask that he order "hydroxocobalamin" and either administer it to you in his office or you can self-inject with it at home (perhaps a friend or family member could give the injections to you). Given the fact that your symptoms are consistent with B12 deficiency, I think it is worthwhile to try this weekly as a diagnostic therapy for a short time. B12 is a water-soluble vitamin; it is not toxic; and it is inexpensive.

[NHE]

Well I did what the doctor told me to do. I took the vitamin B-12 1000 mcgs once a month and did not make any of my symptoms better. At this point have been moved from 75 mlgs twice a day on Lyrica to 150 mlgs twice a day for the pain. This to me just feels like a band-aid placed on a bullet hole; it does not really tell me what is going on with me. Frustration settling in for now. Not sure what to think anymore. I guess the strangest thing is when my face tingles, gets numb, and hurts. The other strange symptoms is that my pain can be on both sides of my body.

I have already been to two neurologist and my primary doctor but still no clue to what is going on. Any insight or advise is welcome at this point because I got nothing to loose only new points of view or possible that I have not had to gain.

If you have supplemented with an oral vitamin B12 (ideally, in the methylcobalamin form) and still have a B12 level below 550 pg/L and have seen no change in your symptoms, it may be that your body cannot absorb it in that oral form of supplementation.

Sublingual B12 supplements also work well. Try 1000 µg/day of methylcobalamin. I've found that the tablets made by Superior Source dissolve quickly and appear to be effective.

[lyndacarol]

Well I did what the doctor told me to do. I took the vitamin B-12 1000 mcgs once a month and did not make any of my symptoms better. At this point have been moved from 75 mlgs twice a day on Lyrica to 150 mlgs twice a day for the pain. This to me just feels like a band-aid placed on a bullet hole; it does not really tell me what is going on with me. Frustration settling in for now. Not sure what to think anymore. I guess the strangest thing is when my face tingles, gets numb, and hurts. The other strange symptoms is that my pain can be on both sides of my body.

I have already been to two neurologist and my primary doctor but still no clue to what is going on. Any insight or advise is welcome at this point because I got nothing to loose only new points of view or possible that I have not had to gain.

If you have supplemented with an oral vitamin B12 (ideally, in the methylcobalamin form) and still have a B12 level below 550 pg/L and have seen no change in your symptoms, it may be that your body cannot absorb it in that oral form of supplementation.

Discuss the possibility of trying B12 injections with your primary care doctor or your neurologists. Ask that he order "hydroxocobalamin" and either administer it to you in his office or you can self-inject with it at home (perhaps a friend or family member could give the injections to you). Given the fact that your symptoms are consistent with B12 deficiency, I think it is worthwhile to try this weekly as a diagnostic therapy for a short time. B12 is a water-soluble vitamin; it is not toxic; and it is inexpensive.

And to update the optimal level for vitamin B12: from page 140 in the book, What's Wrong with My Child? by Sally Pacholok, RN, BSN, and Jeffrey Stuart, D.O. (bold emphasis is mine)

Based on two decades of clinical experience, we believe that serum B12 levels need to be 1,000 pg/mL or more for healthy brain growth and development in infants and children. We recommend the same level for optimal brain and nervous system health and prevention of disease in adults.

[gekco789]

Well I took the kind of B12 that dissolves under your tongue so that it can get into your blood stream. She said wait a month after taking it and then see if my symptoms go away. They did not. She did not retest my vitamin B12 levels at that time. I asked the doctor if I need to take it everyday and she said no that would not make any difference.

When I was first told about my vitamin B12 being low I asked about shots. My doctor told me that most insurance don't cover shots and that they did not even have any of the shots in the office because there is the over the counter dissolve ones that you put under your tongue. I was told that the dissolve tablets work just as good as the shots. But since my symptoms did not go away the doctor is not sure if this has anything to do with vitamin B12 anymore. I am just really tired and ready to have some sort of answer. But I take it one day at a time. Should I just try taking the dissolved kind under my tongue everyday for a week to see if that helps?