[samrose86]

I'd appreciate you taking the time to read through this. I really need some help and peace of mind. Just a little background and then the current. It's been a little under a year since i've posted, but now that I'll be approaching my "anniversary" to first symptoms mark I'm starting to feel more and more anxious that they'll return or something new will come about.

In Summer 2011 (at 24 yrs old) I started losing my hair (rapid shedding which ended up lasting 8 months). Then in Oct 2011 I woke up one morning with what felt like a painless zap go up the back of my head and then my whole left side felt numb. I could walk and do everything just fine, but when I touched my left side there was slightly less sensation than on my right. That went away within a few days. Was referred to a neuro by med clinic since it was the weekend and my pcp wasn't open, had an MRI of brain and spine which were clear. Of course I had googled after this symptom came up and freaked when I read MS so maybe it's possible I gave myself so much anxiety I brought on a bunch of other little symptoms with it - such as stiffness, a random bout of joint pain, rash on my body. I was so worked up, my mind was never at peace. All that went away once I got my MRI results and blood work back and was told by several doctors there was nothing to be concerned about and that it was likely anxiety due to the passing of my mom the year prior, and i was trying to finish my last year of college with a full load. I eventually believed that because I was so close to her and refused to accept that she was gone therefore I never grieved or let myself deal with it. It was just all building up inside (still is 3 yrs later - still haven't dealt). But then some weird symptoms came back a year later, and I thought...Ok, I guess it wasn't stress/anxiety...

So, after all my symptoms went away I was fine for months and months, until August 2012. I started losing my hair again and woke up one morning to SHOCKS in my inner left calf! Literally felt like electric shocks, like I was being zapped from the inside. It was so painful and made me recoil and cry out every time. I saw my dr that day and he just assumed magnesium/sodium def even though I was positive this was nerve and not muscle. Told me to drink a lot of gatorade that sent me on my way (didn't help fyi). Thankfully the severe zaps tapered off and only lasted that one day but ever since then I've had mini versions of those zaps. More like nerve twinges of pain that don't make me stop in my tracks, but it's enough to be uncomfortable and scare me and make the baby hairs stand up on my body.

Ever since that Aug 2012 shocks ordeal, I have also had small muscle twitching, occasional muscle jerks, pins prick sensations all over body, occasional ear ringing, another couple of bouts of numbness but it wasn't my whole side this time. Once it was my face and a patch on my shins, and thighs/arm. The numbness didn't stick around past a day or two, and the leg thing only happened for a few seconds that one time, but these other little symptoms like pin pricks and muscle twitches come and go still, but they were MUCH worse when I seemed to be in my high state of anxiety after the severe shocks happened! So far in 2013 I've only experienced the little nerve pain twinges, pin pricks and twitches (which like I said do come and go more often than other symptoms), and am currenty going through another bout of hair shed. And a month ago I woke up one morning and rolled off the bed to find my right leg collapse on me. I tried to stand twice before it was normal again. I have NO idea if that's a concerning thing, or if I just slept on it weird and it was very asleep, but it wasn't tingling so I don't know.

What should I do? I went back to my neuro after the shocks (but before all the other little symptoms) in Sept 2012, but he didn't think it was necessary to re-do the MRI because my previous one from the year before had been so clear and he didn't really seem to know about these shocks or seemed to have been familiar with that. He suggested sciatica and i had a lower back MRI but it was clear, and it didn't behave like sciatica to me. i have a new PCP and I was thinking of asking her to see the neuro she would refer and get another opinion.

I know symptoms of MS can also mimic symptoms of other conditions. All my blood work (last done Nov 2012) has been fine, but my thyroid was slightly low on one of them. But, some of the symptoms that throw me are the shocks and hair loss (just started up again a few weeks ago), because I've never seen those symptoms with anyone who I've read has MS. What do you think? No one in my fam has an autoimmune or really any heath conditions other than maybe high blood pressure. I just know something isn't right with me, but I'm terrified it could be MS even though it could be something else that's a mimic of it? Always thinking the worst possible thing, right? *sigh*

[bowdowntobri]

Well it doesn't sound like "classic" MS to me, but I'm sure if you read through a couple of threads on here you will quickly see that none of us have the exact same symptom presentation. My symptoms, for example, last for very short periods of time and rarely meet true criteria for it, but boy does my brain look like I have it, so what are you gonna do? My neuro wasn't at all convinced that I had it right up until my MRI came back haha.

I think that perhaps the best thing that you can do at this point is keep track of what you are experiencing and follow up with a new neuro, perhaps. You never know what a year can do for those rounds of tests and what may change.

Best of luck!

[Snoopy]

Hi samrose86,

Although you are having symptoms of something the one that makes me wonder is your hair loss. Hair loss is not a symptom of MS. Hair loss can be due to a vitamin deficiency, thyroid problems, stress/anxiety, some medications and other causes.

Maybe if your Primary Care Physician can find a cause for your hair loss the other symptoms can be explained.

[Kitty]

I'm also wondering about your hair loss as that isn't common with MS.

There are lots of things that can cause unexplained hair loss.....and with your symptoms of joint pain, muscle twitching and body rash I'm wondering if you've had your thyroid checked?

Iron deficiency anemia and lupus are also concerns. Have you been tested for either of these?

There are so many things that look like MS at first glance. You have to eliminate all the things that "could be" before you get to the ultimate MS diagnosis.

[samrose86]

Thanks for the replies. I can't help but think the hair loss is related because the bouts come on around same time I get other symptoms. I've had blood work for thyroid, lupus, vitamin def, etc and everything has been clear except a slightly low thyroid but apparently was no big deal. Haven't had it done again for this year though. To be honest, I also haven't read of anyone having these nerve shocks manifested like mine with MS yet either. Just because they happen and I have pin pricks and twitching does that have to mean there's been damage to the myelin? Meaning MS? It's not the same as that symptom some people get when they put chin to chest. As I said I know other conditions can cause similar symptoms but when it comes to nerve pain I don't know of another condition besides diabetes and MS that can cause cause that. My latest blood work was done in Nov 2012, and my MRIs were done in Oct 2011, but nothing came up too abnormal with either so I don't know what's happening.

[SallyC]

Hi Sam. I've had MS for a loooong time, and the only time I
had hair loss was, when on IV Steroids.

I think Snoopy is right. If your Doc finds out why the sudden
hair loss, along with your other SX, you may find your answer.

I hope you find answers soon.

[karilann]

I agree that it does not sound like MS, but I would fire your Neuro anyway. Doesn't sound like due diligence is being done. When my Neuro wasn't finding anything...she sent me to a Rhumitologist. Anf in 6 months time my MRI's changed from a big negative to a big positive....so I don't know what your Neuro was thinking by suggesting that the MRI's may not change from a year ago. Sounds like he HIGHLY doubts MS and therefore does not want to subject you to another MRI.

With that being said...I agree that the hair loss here is key. I would insist that they run the Thyroid tests: T3 and T4. The standard thyroid test is not that accurate.
*admin edit of copy/pasted material = copyright infringement*
Please see here for the information http://www.womentowomen.com/hypothyr...ttheymean.aspx

And with that in mind I think I would also suggest a consult with a Rhumitologist.

[samrose86]

Karilann, the crazy thing is the neuro I was seeing before specializes in MS too! My new PCP has given me the name a new neuro I'll go see. I just haven't decided if I'll wait, or go now. Thanks for the thyroid info and suggestions. I'll have my pcp run some blood work.

My newer symptoms I mentioned (from 2012-current) which were the shocks, nerve pains like pin prick sensations and creepy crawly sensations, muscle twitches, ear ringing, and that my leg collapsed under me one morning when I got up from my bed (no pain or tingling), but it was fine after 2 tries of standing, are what I'm most concerned about. Numbness, tingling, and those classic symtoms are also what's associated with thyroid, lupus, etc. But could those things really be causing my newer sx as well? I asked earlier, but when you have nerve pain or nerve related symptoms does it HAVE to mean there's been damage to the myelin/nerves? I know I'm going to need to have another MRI done because I'm tired of this AND I want confirmation one way or the other as far as MS goes. I'm just afraid to make step and call just in case it does end up to be the ending of the rest of my life.

EDIT: Oh! One symptom I left off in my first post up there...when I turn my head from the right to look forward there's a clicking/faint pop noise inside my head in the middle but on the right side. In guessing its something in my neck causing it when I turn my head that one direction but it started randomly one evening in Aug 2012 and hasn't gone away! Doesn't hurt, but it's weird and annoying! Any ideas? Pretty sure only I can hear it in my head.

[karilann]

I want confirmation one way or the other as far as MS goes. I'm just afraid to make step and call just in case it does end up to be the ending of the rest of my life.

MS can be a tricky disease to diagnose. Its a bit of a process of elimination due to the fact that sooo many things mimic MS. But to get a MS diagnosis, you have to meet the McDonald criteria:
1: Evidence of damage in 2 or more separate areas of the CNS
(this includes the brain, spinal cord, and optic nerves)
+
2: Evidence that the damage (in 2 or more places) happened 1 or more months apart
+
3: The damage (or symptoms) did not happen because of another disease
=
Diagnosis of MS

It took me about 12 years to get an MS diagnosis because my MRI's always showed up clear of lesions.

I suppose there is the possibility that you have more than one thing going on at the same time too. I'm not a doctor so it is so hard to say.
You have to be patient. Its very frustrating to go through this process only to be told that the doc's can find anything wrong. You start to wonder if you are nuts!
But most importantly, a MS diagnosis is not the end of your life. I was diagnosed in 2002, put on medication, and have not had a reassurance since.
My brother in law also has MS (men tend to have a harder time with MS) and has been taking medication 10 years longer than I..........and he is still sitting on the bench as a circuit court judge.
I still think you need the special thyroid tests just to make sure since your thyroid showed up a bit low..........and you may want to see a Rhumatologist and let them work their magic too.
A MS specialist Neuro is usually the gold standard if you have MS symptoms. Just be persistent with your questions. Keep a journal of your symptoms. When they tell you "hmmm, don't know what it is" then ask "what do we do now?"

[chaos]

Sounds a lot like your thyroid to me too. Your test might say it's okay, but tests aren't always perfect, and many docs work on too wide a range. I was "subclinical", but went on thyroid meds anyway and it's really helped. My hair was falling out too and it stopped after going on meds. What's your TSH number?