Do my symptoms sounds like MS?
 

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*

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!

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.

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.

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.

when
 

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

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.:hug:

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.

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.

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?"

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?

2.230 is my TSH, but my T3 was 21 which was marked as low on my copy of blood work. Could thyroid cause all these other problems/symptoms though?

I too have low thyroid function and low T3. I do think that some of your symptoms may be related to that and at least in my case when the thyroid levels are down despite meds/supplementation (it varies), the MS symptoms seem to be amplified.
Ah yes, the joys of auto-immune disease...(sarcasm off).

Hope that you get it all sorted out quickly.

With love, Erika

I would definitely also get an opinion from a rheumatologist, particularly since you have hair loss (which is just not a typical MS symptom). There is no reason why you can't go to both a neurologist and a rheumatologist.

When I first got diagnosed with MS I was having some weird things going on that were not typical of MS. They recommended I also see a rheumatologist, who turned out to be very helpful in ruling out lots of other weird random diseases--he joked that a lot of time in his specialty they get the cases that other doctors can't figure out. I had such a good experience with mine -- really interested in the "puzzle" of the diagnosis.

Getting more specific thyroid tests is smart if you haven't already.

A MS diagnosis is not the end of your life if it turns out to be MS. Some people have mild courses of the disease even after having a rough time in the beginning.

Also consider that hair loss can be a common side effect of stress -- you acknowledged that you haven't dealt with your mother's death yet. Being iron deficient can also cause hair loss.

So, have you started any new medications since this all began, like an antidepressant? I lost a significant amount of hair on Zoloft -- it really freaked me out and caused a lot of panic. Eventually it all grew back when I stopped the drug.

Hair loss often happens in cycles too. It's called telogen effluvium. Even after resolving the Zoloft issue I had another bout of hair loss a few years later. I didn't panic as much because I knew it would grow back like it did the first time.

Anyhow, there can be many reasons for hair loss. It could be coincidental the hair loss is happening with the zaps and pain. Good luck figuring things out. And seriously consider seeing a rheumatologist!! :)

PS: you said you might wait to go to the new neurologist. Please don't wait! Seek out the doctors you need -- the PCP, neurologist, rheumatologist etc. Trust me, I know it can be really scary but you need to figure out what's wrong. Finding an answer to your problem might mean finding a solution that could make this go away. Consider that option too (an answer and treatment) instead of fearing a big bad scary diagnosis. :hug:

With what everyone else, has suggested, aside from having your possible anxiety taken care of, have you ever seen a chiropractor? A herniated disc, can also mimic some of the symptoms that you've described.

Hair loss, can usually be stress. You mentioned not having grieved your mom, fully, after three years. I lost my mom, three years ago, as well, and I just want to let you know, that I can appreciate the grief you must feel :hug:

MS is an illness that follows the MacDonald's Differential Diagnosis Criteria. And even once MS, is diagnosed, we are not immune to other illness and anxiety and depression can be exacerbated by the illness, itself.

Being an MS patient, is, to me, about taking care of all aspect of your health!

Hang in there!! :hug:

Thanks guys. Truly, thank you ALL for your input and advice! I have an appt with my internist on Tuesday to see about a more extensive thyroid test, and I will seek out a new neurologist and rheumatologist, but what exactly does a rheumatologist help with? I remember my mom had one for minor arthritis. I'm about to take my teaching certification exam in mid Aug, so ideally id like to get that done before seeing a neuro again just in case something comes up positive I don't want to know before that huge exam. Sounds silly, but I know me and I know what it'll do to me. I know several of you have said its not the end of your life but the things that have happened to me - such as the excruciatingly painful shocks, and my leg collapsing on me scares me that that's just another neuro symptom that can happen again without warning. They haven't come again but I can't get a peaceful mind, thinking what if that wasn't a one time thing? I'm an extremely active female in my mid 20s and I fear I won't be able to do the active things I love anymore if an MRI ever comes out positive. I also read a case where someone can't see well anymore and are in a wheelchair. I know everyone's different but it scares the heck out of me. I'm sorry, I don't want to be one of those annoying people, I just don't know much about this at all, unlike a lot of you who are already diagnosed. My previous Neuro who was an MS specialist didnt even tell me this COULD come about later on down the road after my MRIs came back clear. He just said "no MS" and sent me on my way. It wasn't until I came here and read that for a lot of you it took years before getting a diagnosis, and that also scares me because it tells me this may not be over, unlike I thought.

A few more questions I hope someone can help me answer...

1. By the McDonald criteria, when it talks about having proof that it occurred at 2 different times, are they talking about getting proof from the MRI, or the same symptom occurring twice at two separate times? I've had that with numbness.

2. Has anyone experienced the shock pains? It's not something I've ever read anyone having before. It's not like Lhermitte's sign. This was localized in my inner calf and was not a result of me moving my head or neck.

3. Is it possible to be having all these typical MS type symptoms and it really not be MS, or is it just a matter of time before the diagnosis?

Thanks everyone. Just trying to educate myself more here. And Natalie8 - Haven't been on a antidepressent in 7 yrs, but I heard they can cause hair loss. GladysD - I thought about seeing a chiro, but I had an MRI last yr of my low back and it was normal. Maybe I should still go.

A rheumatologist deals with autoimmune diseases, etc.
Very handy for ruling out other causes.

One thing about the McDonald criteria: Seems to me all the other pieces of the puzzle have to fit AFTER a positive MRI. So...when you have 2 or more symptoms separated by time and space that means: You had an issue with your "leg" in January and then an issue with your "arm" in September. (These are examples of course).
Mine where a numbness around my midsection in 1992 and then numbness up the right side of my body in 2001. Doctor declared these two episodes as "my 2 symptoms separated by time and space".

You are in the most scary time right now......before any diagnosis. Its is far more frightening to face the unknown. It actually can be a relief to get a diagnosis.

The shocks you get do sound like nerve issues. I get them also but not very often. One time I was getting them in my head until I figured out that it was a withdrawl symptom from my antidepressant! Very scary. The doctors will need to address that issue since it has knocked you off your feet without warning. I would highly stress to your doctors your concern of getting hurt if this should continue happening. Perhaps a nerve conduction test would be helpful??

I'm not surprised your MS Neuro didn't mention that you could still end up having MS....later down the line. I don't think any doctor would say that to you without some sort of proof to back it up. That would be something that could put some people right over the edge. My Neuro pretty much said "okay, not MS!" when my MRI was clear.......but later after my MRI showed up positive, she said she suspected it all along.

Hang in there :hug: Every one of us understands what you are going through right now regardless of what kind of diagnosis you end up with. It worth mentioning to your doctor the same fears and frustrations you have shared with us. The worst part is not knowing what's going on and feeling like you are nuts because they can't figure out what's wrong with you! ♥

Thank you for your input! This is most definitely a scary time. For some reason, which may sound crazy and ignorant, am hoping it was all just a fluke, anxiety, thyroid or vitamin related issue that can be resolved. But maybe I'm kidding myself. Gotta keep sane somehow! I know the shock pains were not muscle spasms and it felt like something unreal so I'm positive it was nerve related, I've just never read of that localize shock pain by people with MS before. I noticed in a previous reply you also mentioned your first symptom in 1992 and then another in 2002 got your dx. Do you mind sharing a little about that with me? Did you not have any symptoms in between that time, and since being put on medication, you haven't experienced anything since as well? If I understand that correctly I must say that is great news.

I'm so sorry you are going through all of this. It's so frustrating and we have all been there.

Anxiety can manifest in many ways. Hair loss and body zaps are some of the anxiety symptoms. Check out this list: http://www.anxietycentre.com/anxiety-symptoms.shtml I'm not saying it's anxiety but you mentioned unresolved grief and thought I would put this list out there for you to check out. The list is extensive and I know I've posted it here before at some point.

Yes, your thyroid may be causing some of your symptoms as well. A follow up with an endocrinologist might be helpful as they are specialists in this area.

Check that you don't have other deficiencies that may be causing your symptoms.

Of note, a rheumatologist only treats rheumatic diseases such as arthritis, rheumatoid arthritis, lupus, etc. There are other autoimmune diseases that are treated with others specialists, such as an endocrinologist as I mentioned above. Discuss with your PCP which specialist he/she feels you need to see for any follow up.

A neurologist can "send you on your way" if you don't have any clinical symptoms of a neurological condition. I had lesions on my brain and no clinical symptoms and was not diagnosed right away. It took about 3 years for me to get a definite diagnosis. An MRI can and usually does change over time. New lesions can show up, others can become smaller, and some just seem to disappear only to reappear on another MRI. They are a great diagnostic tool but not the only one. There are people who go years without a diagnosis and others who never get a definite diagnosis. We have a family friend that spent the majority of his adult life with some sort of neurological condition that they were never able to diagnose. He eventually passed away and they never knew what was wrong with him. It does happen, but not that often I don't think.

Another great and informative site to check out and help you get a better understanding of MS is http://www.my-ms.org. It is one of the best sites I have come across since being diagnosed. There is a ton of information on there and it may help you in understanding your symptoms. I highly recommend this site to anyone in limbo, newly diagnosed, or even old timers. It's a great site.

Also, has your dr. discussed any sort of symptom management while you await a diagnosis?

I hope you start feeling better soon. :hug::grouphug:

Tkrik - Thank you! I'll check out those sites. My symptoms are pretty spread out, and the strong, painful zaps only happened one day almost a year ago, though I did mention having less strong and less painful twinges of nerve pain in my calves occasionally since then. My previous neuro tried to put me on Cymbalta for it but I had the WORST reaction to it. I've never had any problems with medication growing up and I've been on accutane, several antidepressants and Xanax and never had issues going on or off them, so I didn't even give the Cymbalta package a look-over. I woke up in the middle of the first night with severe nausea and ended up vomitting for 2 hours and blacked out from the nausea. I live by myself and it was scariest thing. I decided this was NOT an option for me. After the day I experienced the shocks is when the pin prick sensations, and muscle twitches started and ive often wondered if my anxiety over the shocks brought that on, but I still get them so I don't know. God knows since my mother passed ive developed crazy anxiety and health anxiety. You mentioned a MS diagnosis can take years, but if your neuro suspects it do they at least put you on medication that could slow the progression in case it is MS?

My neuro did send me on my way after having clear MRI's after my initial numbess symptom in 2011 but he made me believe I was in the clear for good. I knew absolutely nothing about MS other than the symptoms it caused, or knew much about autoimmune diseases. I didn't realize there was a chance it could come up later in life. I was surprised he didn't mention the possibility, but I guess I shouldn't be if this is how neuros work.

My hair loss and zaps are what throw me off. I've never heard of these 2 with MS, and it's difficult because I don't know if there are separate things going on or if they're all related. So far I've been treating the hair loss separately with a dermatologist when in reality it could be related to the other symptoms too. It's all so confusing to me and and definitely a frustrating stage to go through! I'm sure the stress of all this isn't helping either.

As far as deficiencies, I've had blood work done a little less than a yr ago but the only vitamin checked on there was b12 and it didn't even count because my pcp gave me a b12 shot before my blood work and the value was ">999"! Oh and Iron was fine. Sed rate was normal too - I think that is an indicator for autoimmune diseases? I need to have it all done again though, and maybe more vitamin tests.

I appreciate all the support and advice on here. This is much better for the mind than Dr. Google!

Okay guys, so I saw my new internist last week and showed her my previous blood work that had the low T3. She told me that she isn't concerned by it because it's TSH they look at and not T3, but she still sent me off to do another round of blood work just to double check and look at some other things too. We talked about my hair loss cycles and my MS-type symptoms.

I got a call today from her office informing me that my ANA was negative, but my CRP is elevated suggesting inflammation, and my B12 was borderline normal. She didn't test ESR, but it's always been normal in the past. I noticed she tested TSH + T4, not the T3, too. I'm going back in to see her in 2 weeks so she can go over it with me. I'm not familiar with all the blood work stuff, does anyone have an opinion on this? Does this sound indicative of something?

I honestly can't remember the difference in the testing. I know that getting them both tested helps in determining how your thyroid is working. But, again, I just can't remember. I do know that some people have to take a combination of T3/T4 medications and getting them both tested in helpful in determining which meds will be best for you. It wouldn't hurt to ask for a referral to an endocrinologist for further work up. An endocrinologist will be able to review your testing and determine if your symptoms are due to your thyroid functioning or to something else.

As for your CRP, obviously there is some sort of inflammation going on. It could be something as minor as allergies or a low grade infection or muscle/joint/tendon injury to something a little more serious. Is your dr. going to retest you in a month or so?

Inflammatory markers such as CRP and the ANA can be tricky when dealing with autoimmune diseases. They can go up and down. It would be hard to say if the reason for the elevated CRP was due to an autoimmune response or to something else such as heart disease.

"She told me that she isn't concerned by it because it's TSH they look at and not T3..."

That's sort of like saying it's the gas tank indicator they look at and not how much of that gas is actually making it to the engine to fuel the car.

T3 is an activated form of T4 and TSH is the pituitary peptide/hormone that tells the thyroid to produce more T4. Thus one can have normal levels of TSH and T4, which would indicate that the pituitary/thyroid glands as well as the axis between them are fine. Yet there could also be low T3 levels, which could indicate a problem with thyroxin utilization. That sort of problem often involves the metabolic axis between the adrenal glands, the pituitary and the liver (where the conversion is made).

Hormones and how they interact with each other is a very complex study. Given that there does seem to be something going on in that department, an appointment with an endocrinologist might be in order. I wouldn't let the brush off about your T3 levels (if it is severely low) that the internist gave you slide because it can produce all of the same symptoms of primary hypothyroidism.

Good luck.
Please keep us informed.

With love, Erika