19 and falling apart

[Wastelander32]

Ever since puberty I've been the jumpy slightly uncoordinated kid. I played drums a ton and mostly attributed my lack of coordination to not practicing enough. I've had psychiatric problems that first appeared in middle school (anxiety, depression). I perceived some kind of cognitive developmental slowing, comparing myself to my peers. Mostly socially, but also in other areas.

My life has been a roller coaster and my issues have been a major strain on my family. Basically the only significant problem in their lives. I graduated from high school, barely, in 2013. Sometime probably the middle of 2013 my left hand started to become clumsy. I was in the middle of withdrawal from a benzo so I was a train wreck. I barely noticed at the time and didn't think much of it. I got some twitches and fasciculations now and then in random places. My memory was shot but slowly recovering. My world revolved around recovering from the withdrawal.

Sometime in early 2014 I had some shooting aches localized to a few spots in my hands. I woke up a few days later with a slight action tremor in my middle finger on my left hand. My left hand has slowly got worse since then. The clumsiness got worse and has spread. At this point I started doing research online and going to my doctor requesting basic tests that might indicate some of the conditions I had read about, but none of my tests were abnormal. My memory got better in some ways but was a little bit worse in others which didn't really make sense. Then I started having floaters in my vision and a slight static effect.

Late September I assume I got something like a stomach bug, but I never had a fever. My condition spun out of control. I started having shooting pains like electricity, prickling like I was being stabbed with a needle and aching that felt like I had damaged a muscle. All in random spots. My vision abruptly worsened with more floaters and static. There was a crushing pressure around my skull and tightness in other spots. My speech was slurred, drawn out and shaky. I had a panic attack because I thought I was dying. I woke up the next day with severe brain fog. I went to the hospital, had some tests run which all came back fine, and was basically told it was all in my head.

Everything was surreal. I would walk into a room and not remember what I was doing. For a couple days things stayed the same and then my head slowly started to clear a little bit. My stomach problems went away. My clumsy spastic hand got worse and I started having issues in my right as well. The muscles started to feel stiff which I had never had before. These shooting aches began to happen again. When I had to use the bathroom it felt urgent. My vision was slow like my brain couldn't process the world as quickly as it used to. Then the severe brain fog slowly started to come back and has remained. I've had twitching in more places than I can count. Myoclonic jerks and shaking. My hands are only getting worse. The muscles on my face and throat feel tight and off. Parts of my legs feel far away and my walk feels different. Probably Pseudobulbar affect.

I spent October obsessively researching for possible causes. Hoping for one condition slightly less terrible than the worst possibility but slowly ruling them out based on my symptoms. I am at this point fairly certain of my progressive fate. All of my blood work has been normal (vitamin counts good, no inflammation markers), I have no family history of any neurological conditions, including MS, only autoimmune diseases (thyroidits, lupus, rheumatoid arthritis, crohn's).

I am currently in a surreal world, waiting for an appointment with a neurologist the day before Thanksgiving, where I expect I will confirm that my time is limited. Multiple Sclerosis can take many forms and I think I've got a bad one as things seem to be gradual and moving fast.

So yeah. I'm falling apart.

Please everyone do some good living for me. Its comforting to know that the world keeps on turning
It'd help me out if you all could share a little story. Talk about your lives, things you enjoy, people you love, what you do everyday. Even the mundane. Thanks.

[jimmylegs]

hi and welcome there are a lot of things that can be going on that are more subtle than standard testing and interpretation will pick up.. for one thing, could you possibly share your bloodwork results, esp. which nutrients were tested? the 'normal' thing is a farce, unfortunately. at this point in time, it is still up to patients to learn and advocate for themselves. i play guitar, cant feel my hands right, and my band is short a drummer ;)

[Wastelander32]

Hey jimmylegs, thanks

I'll see about getting my blood work together in detail tomorrow. I can remember I've had vit D checked which was 30-31 ng/ml (Right on the cusp of deficient, definitely working on getting that better), magnesium I can't remember but my doc said it was fine, vitamin b12 was 550ish pg/ml so that's probably ruled out (Unless I magically had a sporadic genetic cobalamin transportation issue), and thyroid stuff: free t4 was just barely out of the normal range, t3 normal and tsh normal.

The music never stops

[Scott1]

Hi,

Your note is one of the most poised, clear notes that I have seen for a while. At 19, I think you should be very proud of how well you can articulate your position. This will be one of the major things in your favour. Most of us have had long periods of not being understood so we know where you're coming from. It can be frustrating, particularly if you don't feel well supported. Do you have that problem? We are all a bit wacko here so we will get it if you say what the position is.
I'm a bit troubled you are so fatalistic. Most of us are fighters and I think you are as well. You wouldn't be here if you weren't.
I've been diagnosed for 20 years and had some ups and downs but I never plan to fail because I never fail to plan. There are a lot of strategies to look at and you can look at my posts to see some ideas and others have good ideas as well.
In that time since diagnosis I have raised three children, worked a regular job and done a lot of things that others say I can't possibly do.
I thought my most recent attack was a monster but I am already bouncing back. Lean on us and draw on the ideas if you can. There's some good stuff to read before you give up.

Regards

[jimmylegs]

i'll look forward to seeing your results WL i have a feeling there will be useful steps you can take, that could get you some improvement in your vit D status as well as your symptoms.

[lyndacarol]

I'll see about getting my blood work together in detail tomorrow. I can remember I've had vit D checked which was 30-31 ng/ml (Right on the cusp of deficient, definitely working on getting that better), magnesium I can't remember but my doc said it was fine, vitamin b12 was 550ish pg/ml so that's probably ruled out (Unless I magically had a sporadic genetic cobalamin transportation issue), and thyroid stuff: free t4 was just barely out of the normal range, t3 normal and tsh normal.

Hi, Wastelander32. Welcome to ThisIsMS.

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.) It is generally accepted that the standard range for a normal B12 in the US is set too low. These authors suggest that the bottom cutoff for "low" should be 550 and the B12 level should even be at 1000 pg/mL or more if a patient presents with neurologic symptoms: http://b12awareness.org/could-it-be-b12 ... diagnoses/

As you have indicated, even if the B12 level in the blood is adequate, there can be a B12 deficiency in the cells/tissues if the cobalamin transport molecule cannot get the B12 to the cells. Further testing could be appropriate for you – the HoloTranscobalamin (HoloTc) test is considered by many to be more useful.

I think it is a good idea to request copies of your blood work results. (I must do this because memory often fails me.)

[Youarethecure]

I think you are getting a little too ahead of yourself in all this. I had my first problem at 19 and now I am 25. Diagnosed earlier this year.

It has made me a stronger man and a fighter. You can not ever give in to this disease because that's when it will take hold over you.

Because of this disease I quit smoking cigs, eat WAY WAY WAY healthier, became a "gym rat", and monitor my nutrition and make sure I get the proper things in my body. I also take medication to limit my relapses. It has opened my eyes to life and enjoying it. I went from a border line unhappy introvert, to a person that LOVES life.

Don't ever give up, esp. before you even know what's going on.

[Wastelander32]

Thank you, Scott1.

I'm very fortunate to have a stable and supportive home and family. That being said I've always felt that no one but people with similar issues can truly understand. Like you all

Yes, I think my probably unhealthy attitude is whats keeping the wait for the appointment from eating me whole. The wait was eating me (going through the stages of grief every day) until pretty much yesterday when I succumbed to this mindset and accepted that this is my life now. Whatever is going on is chronic and progressive. I would call myself a realist But I am a fighter. I've endured quite a lot in life and I'll endure the rest to the end.

[1eye]

Thank you, Scott1.

I'm very fortunate to have a stable and supportive home and family. That being said I've always felt that no one but people with similar issues can truly understand. Like you all

Yes, I think my probably unhealthy attitude is whats keeping the wait for the appointment from eating me whole. The wait was eating me (going through the stages of grief every day) until pretty much yesterday when I succumbed to this mindset and accepted that this is my life now. Whatever is going on is chronic and progressive. I would call myself a realist But I am a fighter. I've endured quite a lot in life and I'll endure the rest to the end.

I don't envy you. I am 60 and past the 10 year diagnosis merry-go-round. When I was 19 I had at least 41 more years to go, and never would have believed you if you had told me I would end up here. Or even still alive. But I did straighten out my life a lot from the bad trajectory, I will be the first to admit, I was on at 19. I can tell you this: there is a lot that can happen, in spite of, and because of, your best intentions. A lot. And it will happen.

One of my best friends when I was 19 died in a motorcycle accident this year. I hadn't seen him since 1979.

Pseudo-bulbar affect has nothing to do with walking.

Listen to your body. Give it a lot to do. Set a goal that has nothing to do with sickness. Get lots of sleep. Have fun. Good luck.

[PointsNorth]

Hi lander32,

Welcome to our Fight Club. I like your attitude.

Like Lyndacarol mentioned above you should find out if you have a (functional) B12 deficiency. Although my serum B12 level is sky high (1400) I don't believe the trains are getting to the station ie B12 is plentiful in the blood but not getting "picked up" and transported to the correct destination. I will post my own research shortly. You could start with simple serum blood test. Something you can rule out/in.

Research. Plan. Execute. Breathe and Repeat when Necessary.

I've discovered meditation recently. I consider it a happy 'out of body experience'.

Onwards, PN

[Wastelander32]

Hey 1eye,

I'm sorry about your friend. Cherish those memories.

My writing is a bit disjointed at times. I meant I had experienced the spontaneous emotion that I had read was caused by that. In the past weeks out of nowhere crying like a baby then quickly calming down. At other times very easily teary. It could also just be just the emotion struggle I've been going through now, but I'm neurotic and young and think I have myself all figured out

Thank you sincerely for the advice.

[Wastelander32]

Hi lander32,

Welcome to our Fight Club. I like your attitude.

Like Lyndacarol mentioned above you should find out if you have a (functional) B12 deficiency. Although my serum B12 level is sky high (1400) I don't believe the trains are getting to the station ie B12 is plentiful in the blood but not getting "picked up" and transported to the correct destination. I will post my own research shortly. You could start with simple serum blood test. Something you can rule out/in.

Research. Plan. Execute. Breathe and Repeat when Necessary.

I've discovered meditation recently. I consider it a happy 'out of body experience'.

Onwards, PN

PointsNorth, Lyndacarol, thank you for the advice

I have taken b12 before and responded well to it, albeit short lived (3 hrs at most). I have a big ole' container of 5000mcg sublingual Kirkland methylcobalamin lozenges that I got from Costco. Where else, right?

I'll pursue this further I'm sure. At the very least it makes me feel better for a bit.

[Wastelander32]

I think you are getting a little too ahead of yourself in all this. I had my first problem at 19 and now I am 25. Diagnosed earlier this year.

It has made me a stronger man and a fighter. You can not ever give in to this disease because that's when it will take hold over you.

Because of this disease I quit smoking cigs, eat WAY WAY WAY healthier, became a "gym rat", and monitor my nutrition and make sure I get the proper things in my body. I also take medication to limit my relapses. It has opened my eyes to life and enjoying it. I went from a border line unhappy introvert, to a person that LOVES life.

Don't ever give up, esp. before you even know what's going on.

Thanks Youarethecure,

I really am a different person than I was a couple months ago. I'm trying to stay positive

[lyndacarol]

I have taken b12 before and responded well to it, albeit short lived (3 hrs at most). I have a big ole' container of 5000mcg sublingual Kirkland methylcobalamin lozenges that I got from Costco. Where else, right?

I'll pursue this further I'm sure. At the very least it makes me feel better for a bit.

Taking a vitamin B supplement before testing will skew the results.

[Wastelander32]

Yeah I read about that. The last time I had my level checked it was at least over a week after I tried a 500mcg of cyanocobalamin. So maybe that could have skewed the results. I haven't taken any since I tried one of the 5000mcg methylcobalamin over a month ago, so I'll request the test again when I can. I was all over this stuff. The possible presentations of deficiency, the way folate can mask anemic symptoms and blood signs, the less common causes, transport issues... It doesn't add up for my symptoms anymore.