Finally at the frustration point.

[twitchpain]

Hi everyone! I'm a new poster here. Been reading several posts and can relate to many of you so I thought it was time to share my journey so far. Maybe just venting will ease my frustration. Lol I'm a 37 yr old female. I was a very healthy woman up until a few yrs ago. I was never sick, never had an allergy, and was very athletic.

I'll begin with the things that happened a couple yrs ago that never made sense, but now they do.

In 2012, I suddenly started having chronic head congestion that would never go away. Nothing snotty, green, or yellow. Just felt like a had fullness non-stop. I would frequent the clinic and they always put it off as some kind of allergy or sinusitis. Give me decongestants and antibiotics and send me on my way. There was an episode where I had intense sensitivity to light at work one night. Sharp awful pain in the lights. I had to go sit in the med room with the lights off and my computer dimmed all the way down. I still have to dim the screen to this day. Anyway, after that I had my sclera literally swell up. There was excess fluid just under the outer membrane of the whites of my eyes. It would bulge out and was noticeable. I seen an opthamologist, an ER doc, and 2 different docs at the clinic and they had no idea what it was. Just said it must have been some kind of allergy or allergic reaction. This happened twice in a matter of weeks. I still didn't believe any bit of the whole "allergy" bit, but I went with it.

One night at work, I'm a nurse, this was April of this year, I was in the med room and my vision went completely blurry. Near and far, it didn't matter. I told a Co - worker just in case something happened to me, someone would know what was happening to me. We both found it odd but carried on. I was blurred for about 2 and a half hours. Then it returned to normal.

This is when it all got real. About 3 weeks after that, it was mother's day night. I laid down to nap before work. Slept for 2 hours and woke up hyperventilating and had the worst pain in my left shoulder like I got drilled with a softball. I was carried out of the house and rushed to the ER. They did a complete cardiac work up on me as well as checked me for a PE. Overall, I hyperventilated for about 45 mins total until they medicated me for the pain. They ended up finding nothing and sent me home. Next day, I had the strangest headache that wrapped around the lower back side of my head and nothing would ease the discomfort. I just put it off as a result to my breathing the night before. Day after that, I woke up with a stiff neck, but thought nothing of it because I had fallen asleep on the couch and just assumed I slept wrong. 1 more day, I woke up and the stiff neck had moved down my back. I couldn't look down for nothing. I wad only comfortable with my back arched, head up and tilted slightly to the right. Now I'm thinking meningitis. Went back to the ER, they did a CT of my head and a lumbar puncture. And more labs. Nothing. The discharge nurse suggested me asking my primary about being checked for MS. Light came on. Never even thought of it until then. Went to work the next night. Started at 645pm, and by 8pm, I couldn't walk. I nearly fell in the hall and they put me in a wheelchair and called my husband to come get me.

Few days later, I developed a twitch in my right leg and the worst pain like I've never had before. Felt like I had a burning hot tourniquet wrapped tightly around my thigh and then it would quit and my leg would be jell-o. I also had what felt like icy-hot running down my spine. It would feel like ice but then it would burn. I told him what had been happening to me and what that nurse had suggested and he agreed. He started me on baclofen and pain killers until I could get into my primary.

Seen the primary and he agreed. At this point, the pain was happening in both thighs and just below my knees... and jell-o. But with both legs doing it, I couldn't walk. Still to this day happens if I don't take my meds. He sent me to see a neurologist. Guy seemed pretty on the ball with figuring out what was wrong with me, but I'm losing faith in him. He ordered an MRI of my head and neck only without contrast. I wanted the whole spine WITH contrast. It was negative. He drew more labs including b12 which was low 229. So I've been doing the injections. Doesn't seem to be helping at all. It's been 5 months and I've gradually been getting new symptoms.

I've had my tongue swell for a day and a half. This happened twice. It wasn't red and beefy, it was just huge. I've had the hug pains in my chest and in my abdomen. I can feel drips of water running down my legs, but nothing is there. Sometimes it's on my arms, but mostly my legs. I had a day that I felt like I was being bitten all over by fire-ants, but nothing was there. My muscles sometime crawl. Sometimes I get this wave of pain that feels like I stuck my finger in a light socket and the jolt goes up my arm. One time, my husband had his hand on my back and asked me if I could feel that. I said, "feel what?" He said it felt like waves going up and down my back. I couldn't feel it.

I can barely make it grocery shopping without pooping out. My legs and arms get so weak and tired so quickly and then boom, all done. Walking through the freezer section makes my twitching and jerking worse than it already is.

I used to take long hot showers. Not anymore. After 5 minutes I feel like my core is boiling. I have to turn the water down to all cold and it only feels warm. One time I got a chill and got in a hot shower on all hot water. Just felt warm. Husband made me get out before I burned myself. It's like I'm losing sensation. My legs are constant pins and needles. I'm just miserable on a daily basis.

Last weekend, i had this awful ringing in my ears and everything seemed to be amplified and it felt like my brain was crawling. That is still coming and going. Then this week, I was just getting ready to leave work. I could feel the tremors coming on. Came home and took my meds and it usually eases up in about an hr. Well 2 and a half hours later, I was still violently shaking as if I hadn't taken anything. Went to the ER again and got ativan added to my list of must haves because things are just getting worse now. I went back to the clinic a few days ago because if my ears. The ringing and hollow sounds were making me dizzy so I thought maybe I have an ear infection. Nope. He said there wasn't anything wrong with my ears. So I'm assuming this is now somehow related to my "mysterious" symptoms. Next day, I got this pain in my eye that felt like a nail was stuck in there. I could feel it going all the way back to my ear. It was my right eye. That night, my right eye went double on me. We were watching TV and if I covered my right eye I could see fine. But if I uncovered it, it was like it wasn't moving or focus sing and I was seeing double. I wanted to puke it was so bad.

So here I sit, frustrated to keep getting negative tests when there is something clearly wrong. Only thing pending right now is a 3 - day EEG scheduled for october. I did one in the office and had a twitching fit during that and it was still negative. I see him again next week and I'm hoping for a little more info other than feeling dismissed.

Thanks for your time if you read my story. Any thoughts are appreciated.

[gtg287y]

I'm in this section the same reason you are: because I don't know much about MS and want other people to help me.... That being said, I can offer you some thoughts on the sorts of things I've been tested for and things that your account made me think of.

It seems like the inflammation and swelling might be important. There is a type of muscle weakness called "inflammatory myopathy" that a rheumatologist could test for. Have you been to one? Have you had your creatine kinase levels ever looked at? (They tend to be very high for a variety of the inflammatory myopathies). One thing to REALLY look out for with any type of muscle weakness is dark brown urine, that looks like coco-cola. This is called "Rhabdomyolysis" and (along with high creatine kinase levels) can be a sign of permanent muscle damage and is a medical emergency.

"Myotonia" and "dystonia" are both words I have heard used to describe muscle contractions or twitches, and both can be associated with muscle weakness. If you look into these conditions, you might see some things in common with your problems (they can be associated with different types of muscle diseases or metabolic problems).

I hope I was able to give you any amount of help. Good luck!

-Jenny

[Anonymoose]

Hi twitch,

I'm not a medical professional but a patient. If nothing is showing up on the standard tests, the doctors need to keep looking for unexpected causes. There are a number of nutrient deficiencies/imbalances that can cause neurological symptoms. As tests for these conditions are relatively inexpensive, I would start investigating the possibility that you may be suffering from more than just a b12 deficiency. All of our nutrients have co-factors that are required in order for them to be able to do their jobs. Maybe you are missing something needed for the b12 to work. I would start with a comprehensive metabolic panel (which includes some nutrient levels along with useful kidney/liver f(x) data), vitamin d, calcitriol (high makes me feel like I'm being eaten by fire ants and it can be high with low vitamin d so both tests are useful), magnesium, iron, ferritin, copper, ceruloplasmin, and zinc. If you aren't able to get the tests done, you could experiment by taking safe (not mega) doses of these nutrients in supplement form to see if they help at all. There are so many b vitamins, it makes most sense to me to just test them by taking a b complex, rather than have a blood test.

If you are interested in more nutrient information, Jimmylegs has an extensively researched thread in the regimens section of this site.

Hope you find answers soon.

[jimmylegs]

hi twitch and welcome. you can ask me questions about any and all things nutritional, but i removed my thread and its summary from the regimens section.

[twitchpain]

Thanks for the responses. I was actually back in the ER last week and the ran the basic met and comp levels along with others. And everything was normal. Urine has been fine clear yellow. Only having urgency. It's like when feel I need to pee, I have to pee now!

I worked the past 2 nights and today I've been laid up again on the couch. Walking funny with pain, feet dragging, headache that won't budge, light sensitivity and blurred vision, and I feel like I have a knife in the middle of my spine. My lower legs feel like I've climbing stairs all day and there is no strength left in them. They feel like they are 'buzzing' so to speak. I can't grip anything with my hands. I'm just miserable. But... luckily, I have my next appt with my neuro in the morning to see what's next. If anyone has any suggestions to suggest tomorrow, I'm open.

[ElliotB]

I share(d) many of your symptoms, especially "It's like when feel I need to pee, I have to pee now!" Fortunately, I no longer have that one!!!

My suggestion, and something I did before my diagnosis - work on your diet. Regardless of what you have (and you obviously have something), a good diet can help and would more than likely be beneficial. There are several MS diets out there - all of them seem to work for some in spite of their differences. I believe all eliminate saturated fat as much as possible. Consider the Swank diet, Best Bet, Dr. Wahls and Jelinek to name a few. Also, consider supplements and if your are not exercising, some kinds of exercise program (start of slowly and gradually build up).


You can get more info about diets from the TIMS site here:

http://www.thisisms.com/forum/diet-f9/

There are also many excellent books about MS you can read and would give you some insight. Again, even without a diagnosis, the information may be very beneficial to helping you get/feel better sooner rather than later.