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.

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

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!!

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 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.

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!