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takenbylovely 04-16-2010 08:53 PM

What the heck is wrong with me?
Hello all,

I'm having a bad day today dealing with 'all this' so I figured I'd come here and spill it all (that's your warning that it's going to be long!) and see if anyone had any insight along the way.

I have always had headaches, cluster headaches, migraines. I've never been seen by anyone for them. I thought a lot of them were due to my wisdom teeth being impacted but nothing has changed in the almost-year since having them removed. I've had issues with pain in the left side of my neck for a long time as well.

In 2003, at 19, I became pregnant. At 11 weeks along I started having shooting pain in my left buttock. My OBGYN said it was 'just sciatica' and to stay off of my feet. At about 22 weeks along I quit my job because I just couldn't work anymore. I had a lot of problems with restless legs and cramps while pregnant, which is normal - except that they've never gone away, and neither has the pain in my butt. The motion sickness that didn't really bother me unless I sat in the back of a car started to bother me a lot more and now I get nauseous if I sit in a rocking chair or watch my son ride a merry-go-round. The bed also spins a lot more than it used to (and it never did before! I also do not drink alcohol of any kind ever). When I had a spinal for my c-section (failed induction) I was not breathing. I wasn't having trouble breathing, I just...wasn't, unless I consciously thought about it. (That has stayed with me - any time I am sedated by sedating medication, any kind of anesthesia, I don't breathe properly. Sometimes as I'm going to sleep or am asleep, I'm not quite sure, I wake up to the world spinning. It's taken me some time to realize that I am not breathing and once it gets bad everything spins and I wake up. There is no blockage there, I just don't breathe. To my knowledge this is central sleep apnea, but I don't know for sure. The rheumy mentioned a sleep study but my husband says I don't do it in the middle of the night, only shortly after getting into bed, so she decided against it. Since he works 3rd shift and I'm alone a lot, it's terrifying to me.)

Since then I've been having a lot of pain, mostly on my left side. I have problems standing, I'm exhausted all the time, I have had weird weakness in my right hand with numbness and tingling, shooting pain from my left hip, etc. For three years (up until November) I worked as a waitress and even though it hurt, I mostly managed. About two years ago I had a major spasm in my back that left me laid up for four days - I found a chiropractor that treated it and she noted that it was a really weird place, not my upper or lower back but right in the middle, except to the left side.

I went to my PCP and told him that I was having all of these problems (because that list up there isn't even half of things). He said, 'Okay, we'll do some tests, and if they come back normal, you can come back.' I went for x-rays of my lumbar spine (and knees, since those had started to ache as well) and some blood tests. They came back normal, but I never saw my PCP again - I always saw a student after that.

For months I was being adjusted by an intern. He made notes of how 'screwed up' my muscles were all over and adjusted me all over (rather than just where it hurt, like the chiro) so even though it didn't DO much, I kept going.

Right about the time I was getting frustrated with nothing happening (at the time they were throwing meloxicam and peroxicam also - one did nothing, and the other made me not breathe and have bed spins) I ended up with a new student doctor. Each visit after that was with a NEW student and I kept whittling symptoms down so as to not overwhelm them or have them yell too much about noncompliance with the meds.

Eventually things were whittled down to my hands hurting. They've always cramped up with use and sometimes went numb. Braces didn't help - in fact they made my hands feel very weak and odd. I went to physical therapy and they did note a lot of weakness (and one time swelling) but it didn't help. I went for an EMG to test for carpal tunnel and it showed VERY minor CT in my right wrist, none in my left (though my left cramps just as much as my right). The 'hand guy' (not sure what kind of doctor, sorry) offered surgery, but I wanted to deal with my wisdom teeth and such and have never gone back.

In the meantime I've developed pain that radiates across my lower back with any kind of exercise, I've started to have a lot of problems (particularly more fatigue and more muscle weakness) when I get too warm...and too warm is now about 72. The vertigo and dizziness have gotten worse, my headaches come more frequently, and the pain I've had has gotten worse, comes on faster during the day and lasts longer.

I was going to go BACK to my PCP and start yelling. I went to an appointment to do just that and the office was closed. I kind of freaked a bit on the receptionist and told her that I was having all of these issues and they were refusing to see them together - they're looking at my hip, then my wrists, then my neck, but not putting anything together and just tossing pills that I can't take at me. (My husband works third shift and I have a five year old and lots of pets - I function so little already I can't handle functioning less). I found out at this time that my doctor disappeared with no warning to another state and our PCP was being replaced by a woman I've seen once and cannot stand. I only stay at her office because I know the two office women there and can get them to do what I need most of the time (even though they think I'm crazy and annoying).

The woman set me up an appointment with a rheumatologist. After six months of waiting, I went to an appointment in December to rule out fibromyalgia. She actually took all my symptoms seriously! She sent me for a slew of blood tests and a CT of my brain. Everything came back totally normal save for a Vitamin D level of 17. I immediately went on a dose of 50000 of that for 12 weeks (with instructions to take 2000IU a day after that). I haven't had my blood tested again yet, but I have not felt a noticeable difference and I just took my last megapill on Monday. She also gave me a muscle relaxer that doesn't do much but does help my neck tension (so I only take it if my neck is sore enough that I cannot sleep) and Etodolac. The Etodolac didn't help my pain and upset my stomach so after a month I stopped taking it with her approval.

She told me at the time that she didn't think it was fibromyalgia because there was a lot of neurological stuff going on, too (random shooting pains in my fingers, earlobes, electrical-feeling buzzings, twitches and spasms, trouble starting to urinate or random bouts of urgency, etc...I'm not kidding about my symptom list - it's two full notebook pages!).

In the meantime, I managed to convince my PCP's office to send me to a neurologist. The woman was really resistant - first she needed to get me to the rheumy, then she needed to get the doctor's notes, then she had some other reason why not - I finally got into a neurologist's a month ago, although the Dx just said 'pain.'

I went into the office (after driving over two hours to get there) and in fifteen seconds he asked me if I'd tried Lyrica. I told him the rheumy felt she'd ruled out fibro, so no. "Have you been to a pain clinic?" "No, because I want to know WHY I'm hurting before you throw more meds at me, and that doesn't explain the whole lot of other things going on either."

He then told me that he didn't have my rheumy's medical records and that 'they never get records when they should' so I should go and drive the half hour to physically pick them up then mail them to him. He told me that I could see fifteen doctors and they wouldn't know what it was. I FLIPPED OUT.

I went off on him about how I struggle to walk the 200 feet to take my son to the bus stop, how I can't play ball with him because I can't stand that long or throw a ball more than three or four times before my arm hurts and I'm too weak to do it anymore. How if I go grocery shopping I'm done for the entire day between the walking and putting it away. How every doctor is blowing me off because my bloodwork comes back but I'm not making it up. How I was actually fired from a waitressing job that I just loved because I had the nerve to be upset about not getting the full break I was scheduled because I was in so much pain I wouldn't have been able to work the rest of my shift without it.

This guy was an internist and he went to get the guy he's under. That guy came in and told me that he didn't know what was going on, and that 'by the time everything easy is ruled out' that the answer usually isn't good, as though I've never considered the possibility that, considering the fact that I'm quite disabled - at least compared to what I used to be, and only 25 - but supposedly in perfect health, that it could be something serious. He told me they'd confer with my rheumy and get back to me (when I asked, the rheumy said within a week).

I actually DID go the half hour away to get my records, but I had them faxed again - then I called the neuro's office three times until they magically found them (they had been faxed the first time, too, so they should've had them at my appointment). I have not heard from them, though. Neither had my rheumy as of a month after the appointment.

I went back to my rheumy's office and again, she listened. She wanted me to have an MRI of my brain and had it with and without contrast at my request. I mentioned MS and she thinks I'm crazy but going with it anyway. She mentioned this time, "If it does turn out to be fibromyalgia." I have an appointment in four months and she's going to start me on Neurontin if the MRI doesn't show anything. If it does show something, she's going to send me to a neurologist that is closer to me.

My problem with getting another neuro visit with someone else is two-fold - 1. I don't know of any in this area that are good or bad, and the one I did see was at a major city's hospital, so I'm afraid that I'll end up with someone who treats me like the other one did and 2. my PCP's office does think I'm crazy. I had to actually fight to get the referral to the one, so going to another one is going to be hard.

I had my MRI on Wednesday, and they said my doctor would have the report in a day or two. I am praying that something shows somewhere. Because I feel like, if that test is negative, then I'm going to get some random diagnosis to shut me up.

This week I've taken five days to build a few garden boxes because I can only swing the hammer for a few minutes. Yesterday I scrubbed my deck in preparation of staining and shovelled a pile of topsoil and I literally crawled inside. Today I went grocery shopping and managed to fill a wheelbarrow only four times before I had to stop and go inside. Right now it's almost midnight and my son is still up because I am too tired to get him showered before bed.

Now that I've made the longest post ever (and still managed to leave symptoms out, I'm sure)...does anyone have any idea what is going on? I'm so terrified that this MRI will come back totally normal and then I'll be stuck right back at the beginning with no answers...and no HOPE of answers either.

(If you read all that, thank you, here's a cookie).

1sunny1 04-17-2010 08:59 AM

Re: What the heck is wrong with me?
While I cannot tell you what is wrong with you, I don't have any idea, but you have enough symptoms that I am going to suggest to you to ask your doctor for yest another pill. If you are willing, ask your doc doc Topamax. I suffered for years with headaches and had trigger point injections and epidurals, which helped for a while, then stopped working. I also have fibromyalgia and I take Lyrica and Cymbalta. I am not telling you totake those, that is for your doc to suggest, but I am willing to bet that topamax will help with some of your problems.


ianko8892 04-20-2010 10:10 AM

Re: What the heck is wrong with me?
YES! That is true.

grraandmasue 07-20-2011 07:59 PM

Re: What the heck is wrong with me?

Hi there,
I know it's been a long time since you posted your sad story and I hope by now you have some positive answers to your many problems.
Firstly I will ask if you drink DIET COKE or ANY diet drinks. Please read on. I am simply a mother/grandmother/great grandmother (not a foolish fanatic).
Diet Coke drunk in large amounts is known to cause symptoms of MS.
It seems the ASPARTAME content is responsible for these symptoms.
Please, if you do drink the stuff, stop now!

From an old friend.

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