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Seeking Advice.

Let me start off by saying this might end up a full on novel and I apologize in advance. I am searching for advice and hoping you might help. It might end up long winded because I want to give you a run down of who I am and what has led me to seek online advice rather than continuing with a doctor. I can be light-hearted about things but please don’t receive it as a lack of seriousness. It feels a little morbid simply listing symptoms and saying, “please help!” So here we go with a little ‘about the author’ section.

I am a 31 year old male. 6’0”, brown wavy hair. I enjoy candle lit dinners in front of the television and looking for that special someone who loves Chinese take-out as much as I do. Anyway, back to the medical. I have had the run of the mill bloodwork to check blood count, liver, kidneys, thyroid, etc. Everything a-ok.

Roughly two years ago I opened a new business. So far everything is going great, thanks for asking, but like most new businesses, my taxes show a loss due to large start up costs. When health insurance enrollment comes around, I am forced placed into Medicaid due to the losses being greater than my income. I have appealed both years with no luck. It boggles me that they have someone knocking down doors to pay for health insurance and they decline the offer.

I’ve had strange things happen with my body on and off (mostly off) over the last 10 years but last March things went haywire. Enough for me to see my GP. He ran an ANA test that came back positive. Now, from what I understand a positive ANA can be taken with a grain of salt. However, mixed with my symptoms, my doctor referred me to a neurologist and a rheumatologist. This brings my to why I’m here.

Due to the Medicaid situation, there is not one Rheumatologist in my city that will see me and the closest Neurologist is 5.5 hours away and 10 months out. 10 months fly by and work emergency came up and I could not make the appointment. You read that right.

I am not here searching for a diagnosis and I am not panicked. I am here because there are a few things that have caused me some concern: my symptoms, the positive ANA and my family history with autoimmune diseases. My uncle has MS, another uncle with ankylosing spondylosis and my great grandmother has ALS.

Normally, I would go to a doctor and figure this out. Guess what? Not how it works on Medicaid. I guess I am searching for advice on whether you believe I am on the right track or way off base. Whether you believe, from your experience, I should be more aggressive in trying to get my GP to help me. And maybe just to hear your experiences dealing with doctors before diagnosis and how you dealt with it.

So, what has lead me to an MS forum over others? I could list 1,000 reasons but I will only bore you with the things that is hard for me to write off as “stress”. Drum roll, please.

  1. Starting March one year ago I began to oversleep. I went from getting up at 7:30 each morning to suddnely waking up at 11:00 to find I missed half the work day. Some weekends it was 1-2 pm before I got out of bed. It was college all over again, minus the hangover. During the week when I was at work? The best description is feeling like nothing was real, everything was hazy and that my eyes couldn’t keep up with what I was doing, like my sight was always moments behind where my eyes would look. I was exhausted.
  2. Charlie horses came. For about a month during my hibernation, my body decided it enjoyed cramping. I would stretch my upper body and my bicep would contract in response. For weeks I had anxiety every time I got out my car. When I would exit the vehicle, the muscle where my thigh and butt meet would contract. It was so primitive - muscle slides across seat cushion, sensation causes it to contract or flutter in response. One specific night I’m pretty sure satan came to visit. I went to visit my niece and nephew at my parents house and walked outside to grab something. 10 minutes later I was calling my mother to come get me off the cement outside. When I got out the car, my butt/thigh had slid across the seat and the Charlie horse from hell came, and stayed, and stayed. No matter how much I stretched, I could not get the muscle to relax and stop cramping. Sore for days.
  3. I went through a week or two when I would take a sip of liquid and it would send a lightning bolt through the left side of my jaw and through my entire head. Imagine the flash on a camera. That’s what my head felt like, with pain. Even room temperature water would electrocute me.
  4. I wake up mid-sleep with dead limbs. Not the I slept on my arm kind. I will wake up on my back and both arms are dead until I shake them awake. It usually comes in spurts. Not always tingling, just straight up dead and the anxiety of whether I will ever have arms again sets in. Every time. Why won’t I learn that they will come to life soon. Take a breath, jeez. The first few times I wrote it off as I slept on my arm, then it would be my leg, then both my legs. Only when I wake up and they always come back.

After these things, I see my doctor. Positive ANA and a never ending wait that leads me to seek help from Dr. Google. Great, now I’ve got something I never heard of that will kill me before I learn to pronounce it. Next I end up going to the hospital because…

  1. For a few weeks I had a situation where I would get dizzy and lightheaded when standing. Short version, I got out of bed and heart rate monitor began beeping and the nurses rush in. Turns out simply from standing my heard rate went from the 80’s to 140’s and I had tachycardia. They said I was dehydrated and sent me home. Biggest eye roll in the history of eye rolls.

I’ve been trying to pay more attention to my body and what it is trying to tell me while I figure out what my next move is but here are a few things I notice about my self that I find weird or disturbing.

  1. Forgetfulness. Not your typical forgetful and not consistently. It’s the kind of forgetful where I’m driving down the road and all of a sudden I can’t figure out how to get to a restaurant. The kind of forgetful where you have to pull over because you know it won’t come to you and you refuse the help of gps because you’ve been there hundreds of times. You’re frustrated because you see you’re location and can picture the destination but it feels like your brain won’t work to connect how to get there. As if there’s a glitch and your brain won’t retrieve what it needs. I’m mad just talking about it.
  2. Death by food on many occasions. Usually something with a gritty texture, like bread. Skittles are a terrible culprit that I’m pretty sure has almost killed me multiple times and had my partner leaping over to bang on my back. Why? Because all of a sudden my body cannot swallow food. It just gets stuck until I cough enough to get rid of it. How can I choke on one tiny skittle so many times?
  3. A sneeze can possibly feel like a lightning strike down my spine. I would rather choke on a skittle than have that feeling when it comes and leaves me with a few moments of soreness.

I could go on about how at night the slightest bit of cold causes my toes or one finger to feel like it’s freezing and burning simultaneously or how for weeks at a time I will get a night-time exclusive itch in the same exact spot, often my lower abdomen, that I cannot satisfy. Where I break skin and leave broken skin because i can’t get deep enough and it’s relentless. The boom, after a few weeks the itch decides it’s no longer itchy.

The point is, I’m not here to be diagnosed. Honestly, some of these things could be downright normal. I understand that is what doctors are here for. However, if you made it this far you might understand why I am turning to you. Currently, I do not have the luxury to parade around town seeing doctors in order to find out what is wrong. I would love to hear your stories, your input, and your thoughts about whether you believe I am on the right track trying to find some peace in what is going on. Maybe you might even have another area to check that I haven’t thought about or maybe you have learned to work the health care system and can give me some pointers to speed things along. All help and input is appreciated!

So glad that wasn’t long at all,

Me.

Hi there Jaywalker, and welcome to the forum.

Now, having read your rather lengthy post - pausing for a cup of tea at half-time - I assume you’re in the USA. Almost everyone on this forum is in the UK, and our two health care systems are, to put it mildly, dissimilar; in fact our NHS and your Medicaid are poles apart.

This, I’m afraid, renders us unable to be of much assistance at all, unless of course there are one or two members here familiar with your system, which is possible.

But medical symptoms are the same the world over, so we can chat about those little pests; many of them being more annoying than some of my old friends.

Tell me please, what are ‘charlie horses’ ? I don’t think I like the sound of them.

And to me, a ‘skittle’ is something you try to knock over with a ball, so am bewildered as to what they are.

Hoping you get some help soon.

Ben - who sadly isn’t 31 with wavy brown hair, but is 6’1" - so there!

Hello Jaywalker

As Ben said, being in the US is very different to being in the UK. Our healthcare systems are very different (although long waits are the same in the case of the NHS and Medicaid!)

My first thought (apart from you being young, tall and having a liking for Chinese food!), is that a positive ANA test is more likely to indicate RA (Rheumatoid Arthritis), or SLE (Systemic Lupus Erythematous aka Lupus), than MS.

Given your symptoms, and blood results, this would be why your initial referral was to a rheumatologist as well as a neurologist. A rheumatologist would be the straightforward referral if the doctor was guessing at SLE or RA.

(By the way Ben, Charley Horses = spasms, a more commonly used phrase in the US than the UK! I have no idea where the phrase came from!)

Your symptoms don’t bear any similarity to my early MS symptoms by the way - my first was numbness and pins & needles, first in a single finger, then my legs. Many people have optic neuritis as their first MS symptom, I had it within a couple of years of the first symptom. Then again, MS is a crazy, mixed up disease, some people refer to it as a ‘snowflake disease’, no two people are the same.

So while I understand your asking for our early symptoms, they probably don’t have much relevance to your experience. This then means that for all you or I know, you could still have MS, it’s like asking how long is a piece of string!

Best of luck to you.

Sue

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Hey Ben, thanks for responding! I’ll get to the point this time so you don’t waste another year of your life.

Charlie Horses are a sudden, involuntary contraction of a muscle. Basically just a cramp.

and skittles? Delicious little fruit-flavored candies. Hard to describe, however they are small enough to throw 10 in your mouth at a time. Maybe the size of breath mints?

again, thanks for responding! I’m half rolling my eyes at myself for JUST NOTICING the .uk in there. But you’re right, symptoms of anything can be universal. Without regards to a health care system, do any problems I am encountering stick out to you?

Jay, who is actually bald.

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Well, Jay who is actually bald.

I can empathise with you on the fatigue; I get sudden onset exhaustion which basically ends the day, there is nowhere else to go but to bed. I’ve had that, on and off, for many years. At the beginning I used to try to keep working, but that just stressed me out.

Charley horses! Thank you Sue and Jay, that’s added to my vocabulary. Happily I’ve only ever had a few small spasm-like events.

My first recognised MS episode was Trigeminal Neuralgia, an agonising face pain which you should maybe read up on, it could be what you’re describing in your ‘very nearly an autobiography’ above, but of course, I’m not a medic, so don’t trust me, it could be something else.

Various parts of me have gone dead - leg, foot, hand etc. Some of these have required a short course of steroids; they certainly aren’t sorted out by shaking them about, so what you describe there doesn’t sound like my MS.

I’m afraid only a good medic can sort it all out for you.

Ben, who is actually bearded.

.

I can identify with your lightning type face pain as I also started with trigeminal neuralgia and that is it in its worst form. There are so many symptoms of MS reported by every individual who has it so you may well find similarities with quite a few but of course on my a neurologist can diagnose you and I understand your frustration at struggling to see a Dr. I don’t really understand the American health care system so apologies for that but I do hope you can be seen soon.

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Bearded Ben,

thanks for the reply. I assumed as much about seeing my doctor. This dang health care system. Honestly, I know this is really the only route but trying to get as close as I can to the right direction. If I surrender and choose the neurologist and turns out he refers me elsewhere, another 10 months. It could turn into a 3 year deal with 4 doctors visits. Gotta do what you gotta do though.

After everything that happened over the last few years I knew something wasn’t right with my body. This positive ANA test has been a confirmation that I need to dig more. I’m not a hurry or panic, whatever it is isn’t keeping me from living and enjoying my life for the most part. I more and interested in getting to the root of the problem so I know how to handle or react when it does. Basically, avoiding the dentist thinking shooting pains is something tooth related.

Oddly enough, the dentist asked me weeks ago whether I had an autoimmune disease. Said my gums bleed when touched but I have no cause for it. Not sure, something about she sees it in a lot of patients with autoimmune disease.

i appreciate your support,

Jay, who sometimes has a beard but usually keeps a 5 o’clock shadow.

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Well, 5 o’clock Jay

You say you know it’s the only route, so jump into your trusty old jalopy and journey to the neurologist’s office, even if it is 5.5 hours away and a ten month wait. Even then, I’m afraid, you’ll probably still have to attend further appointments and undergo more tests before you get anything even approaching a diagnosis of an actual condition. Unfortunately, we’ve all had to go through it.

I think, for peace of mind, you need to do it. You need to know what’s going on, it could be serious, but hopefully not.

Of course, with all the waiting, there’s always the danger you might get better before they discover what it is, but you’ll just have to take that chance.

By the way, a dentist can’t diagnose TN, it has to be a neurologist. It’s caused by a nerve in the face, so no tooth drilling. Yippee! I hear you call.

Ben, in wet and windy England.