Possible MS/similar possible conditions?

[Neta]

Hi there, my name is Neta, I'm a 23 year old female.

I'm writing here seeking for advice/opinion regarding my experiences, as I've seen a lot of helpful posts around here and also because I fear that I might just be a hypochondriac and see things that aren't there.
I'm very attentive to my body, I try to be aware of it in order not to neglect it, so it seems like a lot of times I'm picking up on things that my GP/orthopedists disregard as just "things that happen". Like numbness doesn't have to have a cause, because "people experience weird sensations" sometime that aren't significant. And the thought of accepting something without understanding it is like a cloud hovering in my mind.

So whatever I'm writing here, I'm aware that it might not be significant, but I'd love to hear the opinion of those more experienced than I am.
I am going to detail thoroughly so I don't miss out on anything. For whoever reads this, I'm sorry for the length and I appreciate very much the read.

Anyhow, I'll try making a list of things that bother me, not in any particular order:

Numbness -
*about 4 years ago, my right thigh started to become partially numb. As in, I can feel it but the sensation is barely left in comparison to the left thigh or to how it felt before. I freaked out at first because it was very weird, though it never disappeared so I'm just living with it. It doesn't include pain. Also, it (the right thigh) frequently becomes totally numb (usually lasting a few minutes). This can occur when I'm sitting, lying down or walking. I mean, it happens both in rest and during activity. I did some electro test at a time which came up clear, so the person who performed the test told me that maybe I have a pinched nerve. I haven't explored it since.

*about 2 years ago, a small part of my upper back, also in the right area, became numb (if I just touch it I don't feel it at all, but if I press with my nails deeply I feel pain). I first noticed it when I suddenly kept trying to itch there and I frustratingly couldn't, like when you try to itch the bottom of your foot and just can't). It also doesn't go away. Also, the right side of it - where it's transitioning to the skin with normal sensation - there's a constant pain there that changes in intensity randomly. It feels like superficial nerve pain, hurts on the skin when I gently touch it. Sometimes more, sometimes less.
Also, at the same time this started, a minor pigmentation (dark spot) appeared right there.

*a few weeks ago, numbness started (and again it stayed, it doesn't go away once it appears) on an area connecting the foot to the leg. Also on the right side of the body.
This started at the same time as this - at that right foot, when I touch the upper middle/top area, I feel it also down my toes at that foot. Then I can still feel weird sensation in those toes lasting a few minutes afterwards.
There are also spots on my buttocks that I noticed once that when I push my finger there (at both sides respectively) I feel a sharp pain up on a spot on my middle back.


Electric shocks -
This has been happening for many years, I'm not sure how many.
Every few months (it's unpredictable, can be after 2 month and can be after 6 months), begin a period of a time between a few days to two weeks, when I get frequent electrical shocks down a leg (like calf & foot usually). Like electrical pulse, shock, with electric/sharp pain. Each time it can be a different leg. And when it happen, the electric shocks comes throughout the day (regardless of rest or activity) every hour or so.
Sometimes I just get minor (less intense) electric shocks at a finger/toe/thigh. There are periods of time when this happens, it's also less frequent than what I described above (about 3 times a day). Or they just happen randomly as individual experiences.
Besides though, I've experienced a few times where half of my face (either left or right, from the eye brow to the chin) hurts for 2-3 days, feels like nerve sensitivity & pain.


Other sensations -
*I sometimes suddenly begin to scratch a lot, my whole back and arms itch and it lasts for a couple hours maybe. But I think this is normal because it happens mostly when I've been up for a long period of time, so I guess maybe that has something to do with it.

*I get joint pain sometimes. Hip, knee, fingers. It also lasts for a few days up to two weeks. And it doesn't subside with resting.
For example, a couple of weeks ago I started experiencing pain in my left knee for no apparent reason. But it hurt just when I stretched it or bent it, it was intense.
Then it disappeared for a couple weeks and couple nights ago I woke up and the knee really hurt again (I woke up with that leg on the top side while I was sleeping on the other side, so I wasn't leaning on it or anything). Without bending or stretching it, it just hurt and more so with every move but also whenever I touched it. Like the pain on my face that I described, it hurt by just slightly touching the skin.
I think it has to do with the nerves.
Because a year ago for example, I had another flare session of what felt like hip joint pain. This time it persisted for two weeks. Every couple hours or so there was a flare up and it hurt to step on that leg (was on the right side). This time it was so intense that one night it became very intense that I couldn't step on the leg (and it hurt also when I just lied down or had the leg at rest without stepping on anything) that I went to the doctor (which I don't usually do), and he touched a nerve above the buttocks, on on area connecting the buttocks and the lower back, which intensely hurt when he touched it so he told me it was a nerve that was painful.


Other irregularities -
*Every 2-3 months I get a few days up to two weeks when I have night sweats. No matter the temperature (cold/warm/hot/nice), I just wake up sweating all over. Every night until it disappears for a couple more months.

*I was told that when I was 8 years old I had tics. I would blink a lot unnaturally. It disappeared at some point.
Couple weeks ago I was at a neurologist for the first time, she claimed I had physical tics as well as vocal chords tics (I'm not sure what the more formal name for this is). I don't see it really, I mean I'm a person who moves, a lot, also when I sit down, I always play with my fingers or move my legs randomly But I don't think it's tics (and my family agrees with me), so I think maybe she looked at that as tics.
Do you know if people can mistake tics for frequent movements?

*About 4/5 years ago I had vertigo that lasted about 10 days. It came out of the blue and disappeared out of the blue. It was 10 straight days, I never went to a doctor because I was in the army and the doctors there tend to disregard complaints from soldiers who just want a few days break (I live in Israel, army is mandatory, it's not a big deal). Also because it didn't bother me much, it was so weird but I kinda liked it. I think maybe I was less hypochondriac back then. Never happened again.

*About 7 years ago, I was on a flight and while trying to reach for something beneath my chair, I fainted. I thought it was because of stretching my neck for some reason, but I don't know. I don't know how long I was out, but I remember hearing a loud painful scream only to wake up to realize I heard myself screaming in my head (I looked around me and no one heard me. It was very weird). When I woke up I had intense chills and couldn't stop shaking, shivering and feeling really bad.

*Fatigue comes and go. But in long periods. Like a few months on and a few months off. I do tend to also sometimes be energy-less in a mental manner, not having power to do things (not physically) or engage in communication with other people. But rather stay in my room resting/tv/computer. And it is not laziness (like I have a hard time explaining to my parents). I think I just connect it to my moodiness and such.

*A few days ago, during a blood test, I had vibration win the arm with the needle in it. IT was very weird, first time it happened to me. I didn't find a lot of information about it online, but I saw that it could be an indicator of turbulent blood flow. I don't know if this is significant in any medical way, I'm just pointing it out in case someone knows for sure. I don't want to miss out on something that seems irrelevant if it's actually not.

*Since I was younger, I would sometimes not be able to sleep because I had this tension in my legs (thighs) and I to stretch them but it wouldn't help and I just kept moving and stretching them but it's like they had energy inside the thighs that couldn't be channeled. Later on when I grew up I realized this was a phenomenon by the name of Restless Legs Syndrome. It still happens to me every few months or so, the frequency changes.

*8 years ago I started having shortness of breath that would begin at a time when I was down/sad/depressed and would last a few months. The irregular thing about it is that it consists of lous automatic loud & strong inhalations. I feel as if I don't have air, so my body automatically tries to take a deep breath. Sometime The deep breath can't be achieved and I'm stuck with a feeling like I can't get air in. I always assumed this was psychological though.

* Also, every few months, there are a few days up to two weeks where I have a hard time breathing at night (not necessarily in overlap with a period of time when I have also daytime shortness of breath). I can't sleep because of it and I have to pull up my torso to sit down to get air (and at times of regular daytime shortness of breath, that usually doesn't even work either). And it also causes me to abruptly wake up once I'm beginning to fall asleep or just wake up because I can't breathe. This tends to collide/overlap with night sweats.


Bowel -
*I used to get nausea a lot. Now I only get nauseated sometimes when I put in my monthly hormonal contraceptive or if I don't get enough sleep (only sometimes). So maybe it was just because I used to take iron supplements with the wrong foods, so I don't think it's significant.

*About a year and a half (I think) ago I had white spots in my stools. A lot of them. I did several tests and nothing came back. it seemed to slowly disappeared but didn't go away, was like that for about a month and a half. Never found out why.

*About 6 months later (gross estimation, I don't really remember) I had blood in my stool. I had the anal scope thingie, and they didn't find something (they thought it might be hemorrhoid but that didn't come up during the procedure). After that and some blood tests that didn't show anything, I stopped trying to find a reason (the scope was only for the lower power, so my stomach, intestines etc weren't examined). I haven't noticed a re-occurrence since.


Other characteristics of mine -
I never connected these to "a medical issue". I just viewed myself as a person who probably has chemical imbalance or something of that sort. Only when researching online about the other physical things did I find a possible connection to medical issues. But still, I think these things might just be manifestations of my chemical/hormonal functionality and not necessarily something "wrong", but rather how my brain is wired. I don't know though
*I'm very sensitive. Though I believe I always was. I'm moody, my moods can change very rapidly from very high to very low. Both when easily triggered and also for no apparent reason. There are periods of time when my sensitivity is even enhanced and I burst into cry feeling hurt (without a seeming trigger) randomly. I always just accounted this as personal sensitivity (I'm also sensitive to touch, I can jump when someone slightly touches me and I get spooked very easily by minor things etc). I can also feel very cold when others around me don't. I sometimes have chills from neck down my back, but I think they're self-induced. It's like I get this urge to have a chill, so I try to get it out.

*My sleep has been unstable since I was 9 years old. I started having sleepless nights at the age of 10/11, I do not have any sort of stable sleeping pattern, I tend to stay up late but I don't know when I'll want to fall asleep, I can feel very energetic when "supposed" to be tired and I can have a hard time falling asleep when I am tired. Sometimes when I feel like I need a chemical kick (I do not do drugs and I limit my caffeine consumption) I stay up for 24 or 30 hours straight.
I also remember about 3 dreams every time I sleep (which is great imo, it's a whole enriched world).

*I'm quite unorganized, forgetful, have concentration issues (diagnosed with ADD as so many people, though I dislike the concept of such a diagnosis), tend to be late and troubles estimating times, I'm considered to be very intelligent but can't focus often. People say that I can do something that takes 5 minutes in 5 years and some things that take 5 years in 5 minutes.

*I like pain. It isn't a bad feeling for me, it gives me pleasure, it's a good sensation (not in a sexual way). As far as I remember I wasn't always like this. I don't remember when I started liking the feeling of pain.

*I get sick a lot. Viruses wise.


Blood work -
I'm vegan. Have been for the past 12 years (since I was 11 years old), vegetarian 13 years (10 years old). So I've been doing blood tests ever since on a regular basis.
*I never had B12 deficiency. I started taking B12 supplement early on so I wouldn't develop a deficiency.

*Ever since my first listed blood test (11 years ago), I've had borderline anemia. My RBC, HGB and Ferritin are either below the normal range or just at the beginning of it. I've tried several iron supplements, took supplements with orange juice and without caffeine for a few hours before or after, doesn't matter. My ferritin was never higher than 24. My lowest point was 4. It's usually around 12.

*Three years ago I was also tested for vitamin D and it was a bit low, around 32 (normal range was 75-250). I didn't do anything about it, my doctor didn't say anything about it.
A year and a half ago vitamin D was tested again. It was around 43, I started taking supplements and after 3 months it went up to 75 (minimum at normal range). Since then I neglected the supplements a bit, did a blood test a week ago (after about 3 weeks on vitamin D supplements) and now it's about 58. I'll continue taking the pills on a regular basis.

*Three years ago I was tested for some antibodies. All were negative/normal, except for RNP and RNP-A which were "borderline 0.9". My doctor didn't regard it.

*A year ago My TSH was 0.62 when normal range was 0.55-4.78. My doctor didn't regard it. I'm only mentioning it here because I was suspicious about my endocrine system, because of my ever changing unstable energy levels, sleeping pattern, adrenaline sensations and other possibly relevant characteristics (and my lack of energy periods of time).
Since my sleeping pattern began to be unstable (9 years old), I also started having acne at the same time and writing poems about love and passion (both when I was just 9 years old). I started playing online poker for money at the time and touching myself 3 times a day, I think that caused enormous rushes of adrenaline/endorphin which I feared to have fucked up my endocrine system functionality, at least at the time. I was just very attracted to stimulation.


Orthopedist and neurologist -
*Because of the symptoms I described at the beginning, I went to consult with orthopedists. I had Cervical CT done, the orthopedist I went to interpreted it as normal. He said all of the discs seemed narrow and that he would suggest it could be degenerative disease (something like that), but because it's in all of the discs and not just one or 2, then that it's just my anatomy. At the time I had bad neck pain (when it hurt to move it even by a bit) that only subsided after 2 months (so at first I thought it was related yet again to nerves, but now I realize it was probably just tight/cramped muscles. It was very weird cause I never had muscle (?) pain that only went away after 2 whole months).
In the past when I started experiencing other things I described above, I did an EMG test (I explained about it above) and at another time a test where they measure the electric responses with patches they stick onto your skin (I don't remember its name, but it was performed on me on both my arms and legs). Now after meeting a neurologist she ordered those tests again, since it's been a few years since the other ones I guess and I'm a new patient of hers.

*Now for the first time I went to a neurologist a week ago. She sent me to some tests (BERA, EMG+NCT, EEG, blood work).
The blood results came back. Antibodies-wise, the RNP was okay (3 years ago it was borderline), only the DNA(ds)Ab was borderline this time (the rest were okay).
She also ordered copper test as a part of the blood work, the blood test came back a bit high (I have a level of about 202, with the range being about 75-150). 3 years ago it was normal. Though since then I started being on a hormonal contraceptive, I read somewhere that that could be a cause, so maybe it's insignificant considering it wasn't high or low 3 years ago. I don't know. I'm supposed to do a urine test for copper as well, should have the result in a few days.


Additional questions/notes -
*I do not present visual or motor dysfunctions (except for the supposed tics which I challenge the validity of). How uncommon is it for someone with MS to not present issues of those areas?

*I am a student of Computer Science. One of the reasons I went to an orthopedist is that I spend about 12 hours every day in front of the computer. Since I was very young, I would spend a lot of time on the computer, and growing up I didn't pay much attention to correct sitting positions etc. It's a part of why I didn't consult with a neurologist earlier, thinking I would be dismissed because of the obvious possible risks from my routine. But I can't keep ignoring the neurological possible direction, also because orthopedic issues can't explain everything that I experience (I really don't know anymore, maybe it is just a collection of small things, but I still want to find explanation/s). I don't engage in sport, but I'm about to start Pilates so walking to the bus and market isn't the only physical activity I engage in.
Diet wise, my weight is considered normal and as previously mentioned, I'm vegan. I don't eat especially healthy, but healthy enough (aside from being vegan, I barely touch white bread and stick only to whole grains, consume a lot of vegetables etc). I also drink very little water.

*I apologize for the mess, it's very exhausting. Going to doctors for unexplained small things for years, not knowing if I'm just a hypochondriac or not.
Being dismissed for small things because apparently I'm more attentive to small changes in my body than most people. It builds up, new things keep occurring without explanation, and the lack of acknowledgment by others feels isolating.

Whoever managed to read this whole thing, thank you very much. If you have any insight, as to what might be wrong if anything at all, I would love to hear.
Anything you have to say is okay. I can't write things in short without thoroughly detailing, I'll probably remember things I forgot the minute I post this.
Anyhow, sorry again for the length and I appreciate the consideration very much.

[lyndacarol]

Hi and welcome to ThisIsMS, Neta. We are glad you found us; you are not isolated.

First of all, in my opinion (I have no medical background), you are NOT a hypochondriac. You are an intelligent, articulate, and observant young lady. You know your body best; and if you have identified symptoms and abnormalities, you are wise to investigate possible causes.

Your symptoms are nonspecific; they are common to many conditions, which must be ruled out before an MS diagnosis can be made – MS is a diagnosis of exclusion.

Each member here at ThisIsMS has a unique set of symptoms, experiences, and ideas. My ideas currently revolve around vitamin B12. Although you have adamantly stated, "I never had B12 deficiency," this is my area of interest and questions. Other people here will pursue other areas, such as, other nutritional deficiencies, hormones, bacterial/viral infections, vascular problems, etc.

You have shared many test result numbers; I wonder if you would be willing to share the names of tests you have had and the result numbers which ruled out a possible B12 deficiency.

Please be aware that the outdated, inaccurate "serum B12" blood test is not adequate to rule out every B12 deficiency. It is possible to have NO deficiency of B12 in the blood, but STILL have B12 deficiency in the tissues (cells). Normally, B12 in the blood is carried on one of two transporter molecules (either on haptocorrin or on transcobalamin II). ONLY B12 carried on transcobalamin is able to make it into the cells. The newer, more accurate HoloTranscobalamin, a.k.a. HoloTc, test measures this "active" B12 – it is not yet available everywhere (Norway has used it since the mid-1990s; but, unfortunately, not the US.) I hope this HoloTc test was the one you had. At the very least, a serum homocysteine test and a methylmalonic acid test (the urinary form is considered to be more accurate than the blood test) can be used to confirm a possible deficiency.



Diagnosing and Treating Vitamin 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 and their new book, What's Wrong with My Child?); 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."

@4:50 Pacholok says, "MS is a demyelinating disease and so is B12 deficiency. You can't tell the two apart unless you test for that."


Your B12 supplements may well be reaching your bloodstream; but if, for some reason, you do not have enough transcobalamin II (or even any at all!), the total amount of B12 may be on the wrong transporter to reach your cells… You might have a B12 deficiency in the tissues. If this has not been thoroughly investigated, I think this is the place to start.

We care and offer you our sincere wishes and ideas; please let us know how it goes.

[Neta]

Hi Lynda, thank you very much for the opinion and thorough read.
It's reassuring to read.

I saw you commented about that B12 video on a few other posts, I'm watching it right now.

I have actually only done regular serum B12 test (the only name indicator was "B12", so I assume this is what it was).
I just looked again, and I did have minor deficiency 12 years ago (which was long before I presented numbness anywhere), I started taking supplements and it went up.
Though I am going to pursue it and ask my doctor for a more accurate test, as well as inquire about transcobalamin II intake.
3 years ago I had a low-point serum level of 160, which was in the supposedly normal range, although at its lower part. Neither I nor the doctor considered this risky, as long as I started taking supplements again and it went up. MCV has always shown up as normal in the range (middle+).


I've had urine analysis, though not MMA and haven't had the serum form test of it or homocysteine (not by those names at least).
My regular B12 serum levels were as follow (I started doing blood tests about 6-12 months after I became a vegetarian, right when I became a vegan):
2003 - 128
2004 - 329, 274
2005 - 356, 234
2006 - 174, 164
2008 - 543
2009 - 387
2012 - 160 (my numbness started in 2011)
2013 - 333
2014 - 297, 321
2015 - 253
The values are of pmol/L, all were in the range according to lab, except for the first one in 2003 (128). Range started at about 154.

On what hand it would be a relief to find a "cause".
On the other hand it will be somewhat frustrating, the idea that doctors never thought to perform more accurate tests or pay significant enough of attention to the B12 levels.
The ignorance around so many doctors regarding this is alarming.
Went I just went to the neurologist, I told her my B12 levels are okay so she left it alone.
All of the supplements I took by the way were in form of a pill suck onto under the tongue.


Anyhow, I will pursue it further and just wait to see what happens.
Though I wonder - if in the past indeed I had deficiency in the cells and now I don't, can the symptoms still be a long term irreversible manifestation from years ago?

[lyndacarol]

I also assume, Neta, that the "B12" test done was probably the outdated "serum B12" (as known here) which measures total B12 in the bloodstream (the B12 carried on both the haptocorrin transporter and the transcobalamin transporter).

If available to you, I urge you to read the book, 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 205 the conversion of pmol/L to pg/ml is given as follows: pmol/L = pg/ml x 0.738
So, using your 2015 result, 253 pmol/L divided by 0.738 equals 342.8 pg/ml. (which is below the cutoff number of 550 pg/mL recommended by Pacholok and Stuart – see below)

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."

Compare your B12 test results to those recommended by the authors. I have not recalculated all your numbers for picograms; but at first glance, your values of total B12 in the blood seem low. In their book, these authors even suggest that the B12 level should be at 1000 pg/mL or more if a patient presents with neurologic symptoms.

Their website: http://b12awareness.org/

On what hand it would be a relief to find a "cause". Please realize that I am NOT saying that a B12 deficiency is the cause of your symptoms; I only urge you to investigate the possibility thoroughly.
On the other hand it will be somewhat frustrating, the idea that doctors never thought to perform more accurate tests or pay significant enough of attention to the B12 levels. I share your frustration. We have the same situation here in the US.
The ignorance around so many doctors regarding this is alarming.
Went I just went to the neurologist, I told her my B12 levels are okay so she left it alone.
All of the supplements I took by the way were in form of a pill suck onto under the tongue. Sublingual (under the tongue) B12 supplements in the form of methylcobalamin (cobalamin is another name for B12) can treat a deficiency in most people, but not all. Methylcobalamin injections work more quickly to correct a deficiency; the methyl form of B12 must be obtained here in the US through a compounding pharmacy. In the US, B12 injections given in a doctor's office are the cyano-cobalamin form, which is not as easily used by the body as the methyl form.


Anyhow, I will pursue it further and just wait to see what happens.
Though I wonder - if in the past indeed I had deficiency in the cells and now I don't, can the symptoms still be a long term irreversible manifestation from years ago? If a B12 deficiency is caught early and treated, symptoms are usually reversible; if allowed to go on for a long time, symptoms may be irreversible; no one can predict your situation.

We wish you the best.

[Neta]

Thank you, I read everything you write with appreciation.

Sub-lingual supplements do work for me I believe, because my serum levels go up by hundreds after a course of few months on them.
My fear is that I didn't regard this matter with enough importance in the past and so that maybe neurological deficits I experience nowadays are long term irreversible effects from earlier years.
And so that I won't be able to distinguish these possible earlier effects from something more current. And so a diagnosis won't be able to be reached in that case.
I will consult with my GP and neurologist anyhow.

I'll post here again once there's a diagnostic development in case anyone finds it helpful.

Thank you.

[lyndacarol]

I'll post here again once there's a diagnostic development in case anyone finds it helpful.

Please do let us know how things develop for you. You are part of our community and we care about you.