Trying to figure it out and stay calm, looking for insight

[sarahk]

Hi Everyone! I'm Sarah, a 28 year old female living in DC. My immediate journey began about a month ago, but I now believe I began having symptoms about a year and a half prior.

The short story about last year: I was sitting at my desk one day, and noticed blind spots in my vision. I rushed to the eye doctor, and it had already disappeared. He confirmed that I now get migraines with aura. I didn't even have a headache, and dismissed that episode. I saw a neurologist, and after a normal MRI and EEG, he confirmed the migraine diagnosis (even though I told him about the weird tingling sensations in my extremities during this episode). After several months of blissful living, I started getting severe headaches in rapid succession. My PCP immediately pulled me off of estrogen-based birth control, and with acupuncture, the headaches subsided. Again, somewhat blissful living for about 8 months. I had a spell of extreme exhaustion this summer, but got my blood tested to check for iron-deficiency/thyroid, but everything checked out as normal. Also, I'm not sure if this is relevant but it seems relevant to me; my menstrual cycle basically disappeared as I was on estrogen-free birth control. I actually got the worst period of my life (after 3 months of nothing) prior to the incident I'm about to explain. One more note: I have had IBS for many years and was taking the drug Amitiza. Over the year I had lost some weight, to the point that it's been noticeable to friends and family (I'm already a small person, so it's more alarming to them than a good thing), and an increase in UTIs.

The present: I took a trip to Argentina and after getting meds for yet another UTI while there (cipro), on 11/14/14, while touring a theater, asked my friend if she was having trouble seeing in the lighting. She had no idea what I was talking about. Immediately upon my return home, I saw an eye doctor, who referred me to a neuro-ophthalmologist. I'm sure you see where this is going. I have optic neuritis. I was immediately hustled around from test-to-test and was about to start the intravenous steroids, but I got good news: the MRI was normal, the ultra sound of the optic nerve didn't look so bad, and "maybe I just got a virus in South America". The nerve is still swollen, but stable (according to my neuro-ophthalmologist). All great news except: I didn't handle this episode well, and was very panicky/anxious the whole time. I attributed my "other" symptoms to stress. However, in the last 2 weeks, after the on-set of optic neuritis (my vision is still bad but they're "monitoring it"), I've had really scary symptoms: Nausea (it hurts to eat - my face even gets numb sometimes) & heartburn (chest pain and shallow breathing possible), the tingling/numbness/pain in my extremities (though I am able to practice yoga and run - everything seems very intermittent), confusion and clouded thinking, vertigo and dizziness, etc. I'm writing today because I just saw my neurologist yesterday and he's scheduling me for an EMG in 2 weeks. I'm scared, especially because I woke up in the middle of the night this past night with EXTREME sensations in my extremities and across my chest. It felt like everything had fallen asleep, to the point that it almost tickled in some places. I think it got better when I moved around or sat up, and I eventually fell back asleep for a few hours. But...oy vey. This is scary, guys.

What do you all think? You all have great insight. I'm feeling very helpless in terms of knowing what's going on, knowing what to do next, and knowing what to expect. Any and all replies would be greatly appreciated.

One more side note: I'm still awaiting the blood test results from the initial visit to the neuro-ophthalmologist (for lyme disease, etc.).

I hope everyone remains happy and healthy. Life is scary sometimes.

[lyndacarol]

Hi Everyone! I'm Sarah, a 28 year old female living in DC. My immediate journey began about a month ago, but I now believe I began having symptoms about a year and a half prior.

The short story about last year: I was sitting at my desk one day, and noticed blind spots in my vision. I rushed to the eye doctor, and it had already disappeared. He confirmed that I now get migraines with aura. I didn't even have a headache, and dismissed that episode. I saw a neurologist, and after a normal MRI and EEG, he confirmed the migraine diagnosis (even though I told him about the weird tingling sensations in my extremities during this episode). After several months of blissful living, I started getting severe headaches in rapid succession. My PCP immediately pulled me off of estrogen-based birth control, and with acupuncture, the headaches subsided. Again, somewhat blissful living for about 8 months. I had a spell of extreme exhaustion this summer, but got my blood tested to check for iron-deficiency/thyroid, but everything checked out as normal. Also, I'm not sure if this is relevant but it seems relevant to me; my menstrual cycle basically disappeared as I was on estrogen-free birth control. I actually got the worst period of my life (after 3 months of nothing) prior to the incident I'm about to explain. One more note: I have had IBS for many years and was taking the drug Amitiza. Over the year I had lost some weight, to the point that it's been noticeable to friends and family (I'm already a small person, so it's more alarming to them than a good thing), and an increase in UTIs.

The present: I took a trip to Argentina and after getting meds for yet another UTI while there (cipro), on 11/14/14, while touring a theater, asked my friend if she was having trouble seeing in the lighting. She had no idea what I was talking about. Immediately upon my return home, I saw an eye doctor, who referred me to a neuro-ophthalmologist. I'm sure you see where this is going. I have optic neuritis. I was immediately hustled around from test-to-test and was about to start the intravenous steroids, but I got good news: the MRI was normal, the ultra sound of the optic nerve didn't look so bad, and "maybe I just got a virus in South America". The nerve is still swollen, but stable (according to my neuro-ophthalmologist). All great news except: I didn't handle this episode well, and was very panicky/anxious the whole time. I attributed my "other" symptoms to stress. However, in the last 2 weeks, after the on-set of optic neuritis (my vision is still bad but they're "monitoring it"), I've had really scary symptoms: Nausea (it hurts to eat - my face even gets numb sometimes) & heartburn (chest pain and shallow breathing possible), the tingling/numbness/pain in my extremities (though I am able to practice yoga and run - everything seems very intermittent), confusion and clouded thinking, vertigo and dizziness, etc. I'm writing today because I just saw my neurologist yesterday and he's scheduling me for an EMG in 2 weeks. I'm scared, especially because I woke up in the middle of the night this past night with EXTREME sensations in my extremities and across my chest. It felt like everything had fallen asleep, to the point that it almost tickled in some places. I think it got better when I moved around or sat up, and I eventually fell back asleep for a few hours. But...oy vey. This is scary, guys.

What do you all think? You all have great insight. I'm feeling very helpless in terms of knowing what's going on, knowing what to do next, and knowing what to expect. Any and all replies would be greatly appreciated.

One more side note: I'm still awaiting the blood test results from the initial visit to the neuro-ophthalmologist (for lyme disease, etc.).

I hope everyone remains happy and healthy. Life is scary sometimes.

Welcome to ThisIsMS, Sarah (sarahk).

You have asked for "Any and all replies…," here are mine: I have no medical background, but the symptoms you mention (and which I have highlighted) are consistent with a vitamin B12 deficiency. Any person at any age (even 28) can develop a B12 deficiency. Many drugs, including oral birth control pills, block B12 absorption and worsen a deficiency.

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses (perhaps available at your library?) and explore all the tabs at this website: http://b12awareness.org/could-it-be-b12 ... diagnoses/ (and watch the videos on the home page!)

If you are worried that your symptoms could be due to MS, please be aware that MS is a diagnosis of exclusion, made when other more likely possibilities have been ruled out. In my opinion, a vitamin B12 deficiency should be the first possibility your PCP investigates.

[sarahk]

Lyndacarol,

Thank you for your response. You inspired me to look back on my most recent blood test records from this past August. Since you seem well-versed on this topic, are any of these results a red flag (this was a non-fasting blood test)?

Vitamin B-12 427 pg/ML, 211-946 (reference interval)**
Glucose, Serum 125 mg/dL, listed as HIGH (reference interval 65-99)...I believe this was ignored because it was not fasting
Chloride, Serum 96 mmol/L, listed as LOW, 97-108 reference interval
Iron, Serum 188 ug/dL, listed as HIGH, 35-155 reference interval (I was taking iron pills at the time because I believed myself to be anemic)

Nothing else on the test was flagged.

[Youarethecure]

it could be many different things so don't jump to MS. But at the same time, don't think that MS is out of the question.

Try and relax and not worry about it. It is what it is. Worrying or being upset about it is going to do nothing for you..... I know that is hard to do but try your best.

Your best option is to get with a neuro as soon as possible and have them start ruling things out.

Do you have anyone in your family with MS? Do you smoke or have you smoked cigarettes?

I hope the best for you.

Chris

[sarahk]

Thanks for your response, Chris!

I appreciate the notion of trying to remain calm, and I'm doing my best! Prior to last night's episode that compelled me to write in to this forum, I thought I had a pretty mellow week, all things considered. At this point, I'm more frightened by all of these other symptoms than by the optic neuritis itself!

My neurologist and neuro-ophthalmologist seem to be pretty stumped at the moment, but I'm aware this is just the beginning. From what I've read here, it can take a LONG time to get diagnosed. It's comforting to know that many of you have been here. They advised many times that a normal MRI is fantastic news, and I'm also seeking input from my GI doctor at their suggestion.

To answer your questions -- no MS in the family, and I've never smoked cigarettes. We are a family with diabetes, crohn's/colitis/IBS, and heart disease in our genes.

[jimmylegs]

hi sarah your b12 is on the low side - the reference ranges are based on hematological not neurological criteria. 500 pg/mL has been proposed as a lower cutoff for years. you might find this letter re two case studies interesting http://archneur.jamanetwork.com/article ... eid=578491

you might find it worthwhile to read about the wider array of nutrient issues known to affect ms patients, to make sure no others apply. for example with high serum ferritin due to iron supplementation, you will likely have driven your serum zinc levels down. low serum zinc is typical of ms patients, and is linked to optic neuropathy and poor night vision, as well as increased risk of infection. further, low zinc levels can also impair cobalamin status (i'm just trying to hunt down that reference).

[Youarethecure]

I know its hard to do trust me lol

Personally, I ran away and buried my head in the sand and had every single "denial" reason behind my symptoms. I was scared... too scared. I jumped out of an MRI machine because I was not ready to hear the answer. Finally i got fed up with my self being a a little punk and being scared.... and mostly I was running out of excuses for my symptoms lmao. I got the MRI and the rest is history. I was diagnosed early this year but I had optic neuritis at age 19. There was not enough to diagnose me then though. Not until optic neuritis came back (the other eye) last year with many other symptoms. I will be 26 in two months and I am male.

If it MS just know it is something that you can handle. I have changed my life ten fold and all for the better since being diagnosed. I eat better, exercise more, and just overall feel much happier and better. It also made me quit smoking cigarettes 10 months ago.

Diet, exercise, nutrition, medication and lifestyle changes are all things that can greatly impact the disease and most importantly your quality of life.

Hopefully you can be more at ease realizing that even the worst case scenario you are facing can be managed.

Have you ever been bitten by a tick?

[sarahk]

@jimmylegs - you all are wonderful resources! I am going to have my levels re-checked while fasting next week. It appears as though the B12 deficiency is something that doctors look for, but not something they treat often? I was mistakenly self-medicating with vitamins prior to this for separate/superficial issues (I think Vitamin A, D, Zinc, C, Iron, and B6 were included), so I'm guessing that was really dumb. Especially based on the zinc-levels you mention. I will read up on MS nutrition. It's just frustrating because I am already a healthy eater/limited by my IBS. Thank you so much for the link and for the advice!

@Chris - that's wonderful that you've used this experience to turn things around. I'm a little bit of the opposite - I want to find out what's wrong with me and attack it. I've never dealt with something so seemingly life-altering, but I appreciate what you're saying. From what I've read, everyone seems to live full/normal lives, despite the symptoms they are dealing with. Like I said, it's really comforting to know you guys have been here. In terms of MS, I've really only been confronted with the idea of it for a month now. And about the tick - not that I know of. I did go camping with an ex-boyfriend in May of this year, so if it's lyme disease, we can just blame him

To everyone: when dealing with these symptoms/a possible "flare up", is it smart to try to fight through them and be active? I'm an athlete by nature, so I feel better emotionally (and physically at the time) when I run or do yoga. I have a feeling that may have led to my tingling last night, and I should rest more for the time being. What do you normally do?

[lyndacarol]

You inspired me to look back on my most recent blood test records from this past August. Since you seem well-versed on this topic, are any of these results a red flag (this was a non-fasting blood test)?

Vitamin B-12 427 pg/ML, 211-946 (reference interval)**
Glucose, Serum 125 mg/dL, listed as HIGH (reference interval 65-99)...I believe this was ignored because it was not fasting
Chloride, Serum 96 mmol/L, listed as LOW, 97-108 reference interval
Iron, Serum 188 ug/dL, listed as HIGH, 35-155 reference interval (I was taking iron pills at the time because I believed myself to be anemic)

Nothing else on the test was flagged.

I have no training in the area of blood test results and refer you to the book I mentioned above, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O.: http://b12awareness.org/could-it-be-b12 ... diagnoses/

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.

According to these authors, who believe the ranges for B12 levels are set too low in the US, your symptoms ("clinical signs of B12 deficiency") and your value of 427, which falls in their "gray zone," definitely qualify for further investigation by one of your doctors (PCP, neurologist, or ophthalmologist).

As this video suggests, your doctor might confirm your B12 status with additional tests: a serum homocysteine test and a serum or urinary methylmalonic acid test. (The urinary form of the methylmalonic acid test is considered by many to be more accurate.) Recently, many experts think the HoloTranscobalamin (HoloTc) test is the most reliable test to find a B12 deficiency.


"Everything You Want Your Doctor to Know about Vitamin B12"



I highly recommend this 50-minute documentary 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).

Your explanation ("not fasting") seems reasonable for the high glucose (125 mg/dL) level. By the way, B12 deficiency can lead to imbalances in the liver (hepatomegaly), spleen (splenomegaly), and pancreas (where, as you know, insulin is secreted).

I have no knowledge about serum chloride or serum iron results, and simply agree with you that taking iron pills probably elevated serum iron. And, also, I will point out that anemia is a cardinal sign of vitamin B12 deficiency (If the MCV value on your Complete Blood Count is in the high end of the standard range, this indicates enlarged red blood cells, which are a sign of anemia and a late development in B12 deficiency.).

In my opinion, the possibility of a B12 deficiency should be discussed with a medical professional, starting with your PCP.

[jimmylegs]

@jimmylegs - you all are wonderful resources! I am going to have my levels re-checked while fasting next week. It appears as though the B12 deficiency is something that doctors look for, but not something they treat often? I was mistakenly self-medicating with vitamins prior to this for separate/superficial issues (I think Vitamin A, D, Zinc, C, Iron, and B6 were included), so I'm guessing that was really dumb. Especially based on the zinc-levels you mention. I will read up on MS nutrition. It's just frustrating because I am already a healthy eater/limited by my IBS. Thank you so much for the link and for the advice!

sadly doctors on the whole are not trained as nutritionists. there is a wealth of published science to that effect, unfortunately.
i find myself continually teaching medical professionals about nutrition and how to interpret tests in particular. my last doctor retired and when i went to my first appt with the new doc, at one point her comment was that it was like she had come to see me rather than the other way around. strange but true. so if you do go to the doc about your nutrition bloodwork, the first thing i would suggest you ask for is a referral to a nutrition specialist.

i wonder if you happen to have a serum ferritin level on the record? or just serum iron?

if you care to share specific info on your previous vitamin and mineral regimen, i can let you know if the amounts looked decently balanced.

fyi, many of the nutrient problems seen in ms patients are also seen in other chronic diseases, including diabetes, crohn's, and heart disease. for example, low normal magnesium is associated with ms, diabetes, and heart disease, while high normal magnesium is associated with healthy controls.

[sarahk]

@lyndacarol You inspired me to reach out to my PCP and set up those blood tests. It's important to be your own advocate and I needed that push, especially because I'm new/uneducated in all of these things. Thank you for taking the time to look at this post!

@jimmylegs ugh that is disheartening to hear, but not surprising. I agree with seeing a nutritionist, and will get a referral from my GI doctor. And you're right in noting that all of those chronic diseases are probably still in play. It's a step-by-step process, and I need to be patient (so frustrating!). I'm going to circle back with you on those vitamins when I'm able to check out the dosages. Thank you so much, again, for taking the time to respond to my post with such helpful advice!

[lyndacarol]

We are a family with diabetes, crohn's/colitis/IBS, and heart disease in our genes.

By the way, Sarah, B12 deficiency runs in families. Have any of your family members with these conditions been screened thoroughly for a deficiency?

A high homocysteine level is considered to be the best indicator these days (the total cholesterol test is no longer the gold standard) for heart disease risk. (A high homocysteine level can be the result of a B12 deficiency.)

Stomach and GI problems can be a symptom of B12 deficiency.

Description of pancreas/insulin (diabetes) connection with B12 deficiency was in my last post.

[jimmylegs]

hi again sarah - this link will connect you to a short list of previous chats where tims members' blood test results and their various implications were discussed: http://www.thisisms.com/forum/undiagnos ... ml#p230819

[Youarethecure]

Sarah the most important part in all this is to LISTEN to your body. I can not stress that enough. Do not overdue things physically or mentally... no matter what you got goin on.

Personally, I have worked (managing a restaurant 54 hours a week) and worked out through relapses and flare ups. But my intensity is not even comparable to when I am feeling my best.

For example, at normal health I am able to weight lift and do cardio for 2 hours at a time no problem (like I did today). I sweat through everything, feel great and get a real good "pump". But when I am in a flare up I don't even do half that. I usually don't even work my self hard enough to break a sweat. I do what my body is willing to let me do.

As you can see this website is full of really helpful people and a lot of info you can take in. I am still a newbie here myself. I cant express how much this website and its members have helped me through this crap. Jimmylegs has helped me with my nutrition more than one can imagine. I always bother her .... all the time haha

But as explained, MS is a diagnosis of exclusion so hopefully it turns out to be something else.

[sarahk]

That makes a lot of sense. I actually went to dinner with a friend and it was probably even too much for today

What do you do to stay calm during a flare up? Or is it a matter of getting used to it?

Thank you all once again for taking the time to respond to me today. I started out the day feeling helpless and terrified, and now I feel empowered.

It's comforting to know I have experts to turn to when all of these results come in without scaring my poor mother!