Undiagnosed attacks

General
1

For the last few years, even before being diagnosed with autoimmune diseases, I have suffered from the most debilitating attacks. I refer to them as 'muscle siezures', the Rheumy says they are not siezures if the brain scans are coming out normal, says they are attacks, but he doesn't know what they are or what causes them, so perhaps someone can offer me some ideas.

It starts like a Charlie horse, the worst one you have ever had, beginning sometimes in the foot, leg, but most times in the ribs, it will draw up my entire body, like someone is drawing and wringing and twisting me with violent strength, I have absolutely no control, I cannot prevent or lessen it in any way. My head is drawn back to the point of feeling like my neck will break, and the area between my shoulder blades humps out. It feels as though I am ready to give birth from that area. All I can do is scream, though I have never heard a sound like that come from my body!

I'll tell you, it must be like a scene from The Exorcist or Alien movies. My mother and husband have witnessed these and have been totally terrified, as have I.

I take a good variety of pharmaceutical strenth vitamins, have had the blood work to see if it could be a deficiency, it always comes up clean. I have seen two neurologists, had the nerve and muscle tests, MRI, cat scans, X-rays... No one knows what these are, what has caused them, and if you can not diagnose these, you cannot stop them.

I have done extensive research trying to find out what this is, what causes them, and surely how to prevent another one. Needless to say, I feel ripped up and utterly exhausted for a long time afterward.

The first and worst one was after being at the funeral home for a viewing, I thought it could have been a severe reaction to chemicals, but with the other attacks there was no link to chemicals.

Can anyone please tell me if they have any inkling of what they think this is, nothing could be too far out!

Thanks a thousand.

SK

2

hmmm I looked after a person and she was having grand mal seizures. Could it be epilepsy?

. What is really wierd is last night I got a muscle spasm in the front of my leg just below my knee and I have been having back spasms too. Right shoulder fasia around the lats and into my arm. Like having a football stuck on my rib cage sometimes. Nothing like wht you describe though not even close.

3

For years in my teens/early tweenties I had what I thought was weird muscle control in my neck. I could be sitting down then without notice my head would start to turn to the side and pull or pinch something in my neck. Later on I developed charlie horses in the middle of sleep where I would wake up in extreme pain. I never gave it much thought when I was diagnosed with PsA in my early Thirties.

4

No, not epilepsy, I have had 3 entire head MRI x-rays, plus one of the neurologists would have caught that, well, maybe. I think my GP is still expecting something like Lupus, as my first diagnosis by my GP was overlap syndrome, where you have symptoms of several autoimmune diseases, yet don't have any. That was before Sjogren's showed up on the blood tests, and that was the game changer.

I also have increased numbness in my hands, so he is also looking for MS. Personally, I feel like I have far too much now, but knowledge is power, can't fix it until you know it's broken. I hope that you never do have anything exactly like this, but thank you so much for letting me know, because there is another reply from a young man who has had something like this too. Could be an underlying part of PsA. When they don' t know what causes it, or what to treat it with, they can't know everything about it. These diseases never seem to be alone, they always end up bringing other disorders along with them. Wonder how many others have had similar experiences?

I came by my diagnosis via trauma, from a car accident, that I could never get over, and I know that with trauma the tendons and ligaments can shrink. The exclusive,expensive spa treatments include collagen injections into the tendons to make them more elastic, due to the shrinkage. I took collagen supplements for years until I read that the acids of the stomach destroy it before it can go where it needs to be sent. The Rheumy also told me that most tendonitis starts in the ribs, but what about the rest of it? Answers are always so incomplete.

I put little trust in the neurologist though, he told me that his answer to what was wrong with me was that I was 'stiff',(I thought my GP and DC would have to be revived when I dropped that diagnostic bomb on them!) I have since wanted to storm his office, along with dozens of others, with the diagnosis that I have so far with PsA, sjogrens, raynauds, just to kick it off, but with increased chronic pain comes less self control, so best I stay away from those people. It is one thing to say "I don't know", it is another to totally minimize someone in intractable pain, paying them top dollar for an opinion.

My DC still thinks I have RSD, yet no MD will support that, though my GP says I have RS something, just not dystrophy, that dystrophy is something you are born with, yet is defined as caused by nutritional deficiencies.

After a while you just get so lost...


2trees said:

hmmm I looked after a person and she was having grand mal seizures. Could it be epilepsy?

. What is really wierd is last night I got a muscle spasm in the front of my leg just below my knee and I have been having back spasms too. Right shoulder fasia around the lats and into my arm. Like having a football stuck on my rib cage sometimes. Nothing like wht you describe though not even close.

5

Thank you for responding J, I am sorry that you must suffer from any of this, especially when I see your photo with your dear little children. It is difficult for children to understand the limitations of this disease, as I know what it is like trying to make my grand kids understand, my great grandson is too young to comprehend much past a little 'boo boo'. I give all that I possibly can every time I see them, because I know that one day I will turn the corner, and will be capable of much, much less. They are my heart, and my reason to keep fighting this, I know you relate!

6

SK I hope you can get a definitive answer soon or at least one day. Yes we all have multiple problems. Everyone I have met online has more than one thing happening like RA and Psa and lupus. There is an answer out there for you. Some doctor is going to figure it out take care.

7

Thank you for the encouragement 2trees, I haven't given up yet, but I surely have contemplated it. This disease had plagued my grandmother, but just as arthritis, and bone loss. All my grand kids, and even the great grandson has psoriasis, with me it is the pitted nails and joint deterioration. I keep using a variety of things on their skin, along with the oatmeal baths. I grind my own oats in a blender for that, coconut oil is good too and jojoba oil helps my grandson, he has it the worst. I have cupboards full of stuff for their skin, and I hope and pray it never hits their joints. My son has the pitted nails, and no discs left in his lower back, years ago they shot silicone in to replace them. We can only hope that stem cell research will one day stop these genetic diseases from being passed on.

8

Do you take Enbrel? I just started it Friday, have high hopes for it. Sulfasalazine and Methotrexate did not work, and I had bad side effects from those.

2trees said:

SK I hope you can get a definitive answer soon or at least one day. Yes we all have multiple problems. Everyone I have met online has more than one thing happening like RA and Psa and lupus. There is an answer out there for you. Some doctor is going to figure it out take care.

9

OK, SK, you said nothing would be considered to be too weird, so here goes. before we go further, I'm going to ask you to look at a few pictures, just to make sure we're talking about the same thing. You may find them upsetting, so look a you own risk.

Look at these pictures: (Sadly, most of them are of babies,) Cut and paste these lines into your browser:

http://www.google.com/search?tbm=isch&hl=en&source=hp&biw=1252&bih=520&q=Opisthotonos&gbv=2&oq=Opisthotonos&aq=f&aqi=g4g-s3g-S2g-sS1&aql=&gs_l=img.12..0l4j0i10l3j0i24l2j0i10i24.3892.3892.0.12640.1.1.0.0.0.0.99.99.1.1.0...0.0.IcN9cuO6OiY

Does that resemble what's going on with you? It's called opisthotonos, and it's regard as a symptom, not as an ailment. So it would still have to be tracked down to the cause of your problem.

Doctors are trained "don't look for zebras; there are horses all around you." Meaning, don't look for an exotic explanation when a more reasonable explanation is handy. it's good advice really, they don't want to treat us for sleeping sickness when we are simply sleeping from exhaustion.

This is what I found that seemed to follow the description of what you wrote--to a point. It's not a perfect fit. There isn't much about transient opisthotonos, so I may be sending a dog on the wrong hunt, if you get my drift. If I'm reading the literature correctly, this can be caused by electrolyte problems, and the supplements you say you are taking may figure into the mix, among other things. I am NOT suggesting this is what is going on with you. I am sending this link for you to investigate to see if YOU think it fits. I guess it's worth a shot. If you look at it and say, no, that's not me, then we need to try something else.

I've had spasmotic torticollis--a neck spasm that comes when I am asleep, is quite severe, pulls my head to the side so that my chin is on my shoulder, and i just stays that way. And I, too, sit and scream. Nothing I do will change the position or the pain. It resolves on its own over a period of a few weeks. I don't think this is what you are dealing with, although it is similar.

Good luck in trying to find a diagnosis. I know how frustrating this can be. Keep us posted.

10

Hello Birdfeeder,

Thank you for responding, I checked with my husband and Mom, I wanted to know if this is what they saw with me, they did not agree that my head was drawn back, more drawn down to my shoulders, but agreed with my explanation of the rest.

Yes, vitamin, electrolyte is the first thing I thought of too, I have even started drinking much more gatorade hoping it will remedy the problem, but it is starting up again, in my ribs. Sometimes it nags at me other times it hits hard with no warning.

Thank you for your input, if you think of anything else, no matter how weird, please pass it on.

Hope that you are getting some relief with the ST, sounds very challenging!

SK

Byrd Feeder said:

OK, SK, you said nothing would be considered to be too weird, so here goes. before we go further, I'm going to ask you to look at a few pictures, just to make sure we're talking about the same thing. You may find them upsetting, so look a you own risk.

Look at these pictures: (Sadly, most of them are of babies,) Cut and paste these lines into your browser:

http://www.google.com/search?tbm=isch&hl=en&source=hp&b...

Does that resemble what's going on with you? It's called opisthotonos, and it's regard as a symptom, not as an ailment. So it would still have to be tracked down to the cause of your problem.

Doctors are trained "don't look for zebras; there are horses all around you." Meaning, don't look for an exotic explanation when a more reasonable explanation is handy. it's good advice really, they don't want to treat us for sleeping sickness when we are simply sleeping from exhaustion.

This is what I found that seemed to follow the description of what you wrote--to a point. It's not a perfect fit. There isn't much about transient opisthotonos, so I may be sending a dog on the wrong hunt, if you get my drift. If I'm reading the literature correctly, this can be caused by electrolyte problems, and the supplements you say you are taking may figure into the mix, among other things. I am NOT suggesting this is what is going on with you. I am sending this link for you to investigate to see if YOU think it fits. I guess it's worth a shot. If you look at it and say, no, that's not me, then we need to try something else.

I've had spasmotic torticollis--a neck spasm that comes when I am asleep, is quite severe, pulls my head to the side so that my chin is on my shoulder, and i just stays that way. And I, too, sit and scream. Nothing I do will change the position or the pain. It resolves on its own over a period of a few weeks. I don't think this is what you are dealing with, although it is similar.

Good luck in trying to find a diagnosis. I know how frustrating this can be. Keep us posted.

11

Hi again, SK,

The only other things that come to mind are RSD/CRPS or tetany. You already are familiar with RSD. Tetany involves involuntary muscle contraction, usually as a result of calcium deficiency. In severe forms, it can mimic grand mal seizure. I saw this once when I was in nursing school, and it really does look like grand mal tonic/clonic seizure. Wish I could be of more help, and hope you find some answers soon. Keep us posted.

12

Hello Bird Feeder,

My DC still swears that I have RSD, and myofacial pain syndrome, (along with the other AI disorders) but my GP and Rheumy disagree on the RSD, and do not comment on the myofacial.

I have upped my calcium intake and added Coral calcium to the mix, also gone back to the sub-lingual B12 as I have lost my appetite months ago, and dealing with hair loss.

Yes, my mother thought for sure that it was a grand mal seizure, that is how severe these are, my husband was absolutely horrified and he is a relatively unshakable combat vet!

Hey, after the Pain Management shots, I will try almost anything. I got to the point where I was so inflamed from all of that, and the harpoon of the myelogram that I could not be touched by the DC, acupuncturist, massage therapist or anyone else, I crashed so hard and long, I thought I would never come out of it.

My GP no longer 'pushes' on my back, I only go to the DC when I am either extremely well or unwell as I cannot tolerate the car ride, anything invasive totally provokes my problems.

I just investigated CRSP, sounds possible, but the only skin changes I have noticed is in my hands and wrists sometimes, they swell to the point of looking like they will burst, feel like I have been beaten with a hammer, become as red as fire, but I thought that was the Raynaud's. BTW the med I was given to dilate the blood vessels is as helpful as chewing gum! ha!

Guess I will have to start a film library of all of this, if we can figure out how to take videos on the camera, and these 3 Doctors that I trust and admire will not totally agree on all of it and they actually do all work well together. I would be lost without them!

Bird Feeder, thank you, you have been a wealth of information, I am so very sorry that we had to meet sharing the same disease. You have to be a phenomenal nurse!

I wish you well, literally! I will keep you posted, please let me know if you think of anything else, please know that you can contact me anytime, any reason.

Hugs,

SK

13

Hello again, SK

While I did go to nursing school, I am not a nurse. I was young; I quit. For that I have regrets every day! But, that's another story.

When you read the descriptions of each of the syndromes you are talking about, remember, every patient will not show each of the symptoms described. Some folks get a cold and get a runny nose and a headache. Others may have sinus pain, watery eyes and a cough. You may not experience the skin issues exactly as described, but you could still have the syndrome. Not saying you do, only that it's a possibility.

I noticed that you mentioned coral calcium. You may have a personal preference for taking this form of calcium, and if that is the case, I'm not trying to argue you away from it. IMHO, it's usually a little expensive and the expense may not be worth it to get your RDA of calcium. Coral calcium in the 1990a was found to contain lead above allowable limits. I don't know if this is still the case or if this has been corrected.

Expert opinions seem to change pretty frequently about calcium, but two forms seem to stay at the top of the list: calcium carbonate and calcium citrate. Carbonate forms may be more easily absorbed by most people. Citrate forms are probably better for folks with predisposition to form kidney stones.

Also, you seem knowledgeable about supplements, you probably are aware that calcium is pretty much useless without adequate vitamin D. I get OsCal that has vitamin D in it. Been taking that for about 30 years without issues. Some of the newer wisdom suggests that calcium alone may decrease the elasticity of arteries, and the recommendation is to also meet the RDA for magnesium while you supplement with calcium. I don't do this personally--only one NewZealand study seems to have come to this conclusion thus far. A wise MD said to me once, "Don't be first; don't be last." --meaning, don't rush in to new medical treatments and get out before it's too late. lol

Have you had your B12 levels checked? Most MDs I know swear sub-lingual B12 isn't absorbed correctly; they insist it has to be given IM. If you're like me, you don't care about how you get it, just that you get it so it has a chance to work!

And finally, I've also been diagnosed with myofascial pain syndrome. Sorry you are dealing with this, too! I've had the injections in my back, and they did help a lot. We, unfortunately, lost the only pain center here that offered those. So I'm living without them, but I do miss them.. My back misses them!

Thank you for the well wishes. I can use all of those I can get these days!!! Same back to you. Please keep us updated. Getting a diagnosis can be tough. Hang in! :-)

14

I am so sad to hear your story. I hope you find an answer very soon. I'm sorry I don't have one, but I think your idea to reach out on the internet is a great one. Surely someone out there will know. Keep posting on different sites explaining in detail like you have been and don't give up! It is so discouraging when a doctor treats you like you are exagerrating. I shuttered when I read your comment about the Rhuemmy saying you are just "stiff". I had a similar experience (except my symptoms aren't as severe) and it made me want to throw in the towel with doctors in general, so I can only imagine how you felt about that. Don't give up on doctors either, just throw that one away and move on until you find one that's smart and caring. I remember when my one year old son was suffering from breathing problems. He was gagging and gasping everynight. He struggled to breathe and it was really scary. We went from specialist to specialist trying to figure it out. I'll never forget we were at the ENT and when I finished telling her the story, she asked "does he turn blue?" I said "no, he doesn't", and she simply said I didn't need to worry about this problem unless he turns blue. End of story. I lost my own breath! Why would I casually make a scheduled appointment with an ENT if my baby turned blue, we would go to the emergency room for god's sake. Thank god I didn't listen to her. I just kept on searching everywhere I could. I finally got advice (from my own doctor) to check his immune system since I have an auto immune problem. I demanded his doctor to do the blood tests, and there you go. It turns out he has a serious immune deficiency and so his respiratory tract was chronically infected. Over time his throat became scarred and made it more closed up making breathing even harder. He just needed one medicine to fix the problem. He's been just fine ever since. Not one more sleepless night (for both of us!). Moral of the story is, don't get discouraged and give up. Your answer is out there somewhere.

15

Dear Byrd Feeder,

I started this reply and then needed to do some research, and lost all I have written, it does not appear to have 'stuck', so I will begin again.

Firstly, I thank you for your shared wisdom. I take Cal/Mag with vit D by Douglas labs, which is the supplement of choice of my DC, also a multiple of his choice. The coral calcium is something a couple of local ladies with FM swear by, and I noticed no difference, so they went in the back of the cabinet. I had heard nothing of the lead levels, and will find out more about that before I take another, BTW, I have 3 bottles of it! HA!

No, I do not think my B12 levels were tested, but I know my Internist checked me for various ones, and some took weeks to come back, I really should re-check that with him, so I know what I am doing. Now what I had read about the B12 is that the liquid was the way to go, so not all agree on that either.

I will fully admit that some days it is all I can do to swallow the meds, so am guilty of not always taking the same vitamins everyday.

Like today, had the chills then the sweats, so I guess that is the 'flu like' symptoms of a flare. Good thing is that I have slept like a rock, last night and today.

I watched the tail end of a very interesting presentation on PBS this evening on probiotics by Brenda Watson. She gives you tips on how to purchase the best ones and this is available on Youtube. Like many others, her theory is that all disease is caused by inflammation, she goes on to say that it starts in the gut, and the gut is where you do your prevention and cure.

As you know all DC's are vitamin gurus and all push the probiotics, not sure all of theirs meet her criteria, and price point must surely be a factor.

I bought a Tommy Copper top and shorts and have been wearing them, light compression wear woven with copper, they seem to be helping a bit with motion. I was wondering if increasing my copper intake would help, my multiples have 2mg (glucanate) and state it is 100%. I have used denture adhesives for years, these supposedly robbed the body of copper. Do you think increasing beyond 2mg is unwise? Don't need to tox out, you know!

So sorry you lost your source of relief, Pain Management is a great source of relief to many, and it may have been for me in the beginning, then I hit a point where it became too much and at present the less I am touched at all, the better, though my DC is a great source of relief, I would go more often if her were closer, car riding for me is the very worst, bending right behind it.

My Internist mentioned a spinal tap, I asked if he would do it, he said not the way they are done at present as they do not use Xray anymore, so I declined that for all the right reasons!

I love to watch House Hunters International, and by far, New Zealand is one of the most beautiful areas of this planet, and the Zealanders and Aussies I have met are just as beautiful.

Until we chat again, I wish you health.

SK

16

Dear LC,

Your story of your baby is far scarier than mine, so very glad your baby is okay. Hopefully one day they can finally find a way to stop this horrible disease being transferred to our young, it is a tough enough world for them when they are 'well'!

Please note that it was NOT my Rheumy, but instead my ex-neurologist that came up with 'stiff'! I know how difficult it is to contain myself sometimes, with such answers, but with a sick baby it is nearly impossible. I cannot begin to tell you of all the doctors I have gone through and some of the responses I have had. They are simply beyond comprehension!

Thanks for the input, if you come across anything, please let me know.

SK



LC said:

I am so sad to hear your story. I hope you find an answer very soon. I'm sorry I don't have one, but I think your idea to reach out on the internet is a great one. Surely someone out there will know. Keep posting on different sites explaining in detail like you have been and don't give up! It is so discouraging when a doctor treats you like you are exagerrating. I shuttered when I read your comment about the Rhuemmy saying you are just "stiff". I had a similar experience (except my symptoms aren't as severe) and it made me want to throw in the towel with doctors in general, so I can only imagine how you felt about that. Don't give up on doctors either, just throw that one away and move on until you find one that's smart and caring. I remember when my one year old son was suffering from breathing problems. He was gagging and gasping everynight. He struggled to breathe and it was really scary. We went from specialist to specialist trying to figure it out. I'll never forget we were at the ENT and when I finished telling her the story, she asked "does he turn blue?" I said "no, he doesn't", and she simply said I didn't need to worry about this problem unless he turns blue. End of story. I lost my own breath! Why would I casually make a scheduled appointment with an ENT if my baby turned blue, we would go to the emergency room for god's sake. Thank god I didn't listen to her. I just kept on searching everywhere I could. I finally got advice (from my own doctor) to check his immune system since I have an auto immune problem. I demanded his doctor to do the blood tests, and there you go. It turns out he has a serious immune deficiency and so his respiratory tract was chronically infected. Over time his throat became scarred and made it more closed up making breathing even harder. He just needed one medicine to fix the problem. He's been just fine ever since. Not one more sleepless night (for both of us!). Moral of the story is, don't get discouraged and give up. Your answer is out there somewhere.

17

Byrd Feeder,

I checked out the coral calcium, you are so right about the lead, and high levels of mercury were also present, especially the coral from Okinawa, and guess where mine was mined? You guessed it! It is out of here!!!!!

This is the kind of negligence that will allow the government to take control of all supplements and vitamins, and believe me they have been trying to control them for years. They need to work on the toxic dumping instead!

Thanks for the heads up, lead and mercury poisoning is not one I want to add to my list of ills!

SK

18

You're quite welcome! I have been in your shoes, struggling for a diagnosis, and I understand how frustrating it can be. In the face of what you have experienced, I can imagine how worried and frightened you must be.

BTW--I have learned, when composing a message for this board, to create my message in Word or another program, then copy and paste it to the discussion board. When I type directly into the website, I lose more messages than I actually ever get to send! This hasn't always been true. Wonder what started that? Anyway, sorry you are losing messages, too. But, back to your concern.

I don't consider myself to be any kind of authority on supplements. You just happened to mention a few I knew a little about. :-) I will say, though, that IMHO, supplements can be tricky. Every element has a range of what is considered normal. If your blood shows low levels of any element, then it makes sense to supplement dietary intake. Taking supplements without knowing your blood level seems to me risky. Too little, and you are wasting your money and not helping anything. Too much, and you risk creating a new problem. In my own case, I take so many meds that I worry about the interaction of supplements with drugs.

Unfortunately, I know nothing about copper supplements. I suppose the safe level of what you can take as supplement would depend on what you already are ingesting via diet or even as residue in water from copper water pipes. I know that sounds outrageously picky, but I can't help but wonder about it in a supplement for which the safe range of intake is so low to begin with (as you said, 2-3 mgs).

I am quite interested in probiotics, and I try to include them in my diet. I prefer to get them through natural sources simply because I am too simple to understand how they can dry and put a living organism in a capsule and keep it alive for months on a shelf. lol Stonyfield yogurt is my current supply. (I picked that brand after researching actual bioavailability of the probiotics in specific brands. Wish I still had the link!) I have noticed no improvement in arthritis, but do notice a huge improvement in inflammatory bowel symptoms. This is probably because of the specific strains of bacteria present in the yogurt. If you do ever come across info about which probiotics are specific for autoimmune arthritis, I'd really appreciate your sharing that with me!

Just use your head (sounds like you do), be careful and talk with your docs before you begin new supplements, and absolutely pay careful attention to anything new that develops after you begin one. As you know, there's a lot of "snake oil" out there masquerading as relief!

19

SK, first off, I'm sorry to hear of these terrifying attacks. Regular charlie horses are bad enough. I can't begin to imagine what you're going through.

Have you checked the net to see the reactions to overdosing on mercury or lead? You mention that the coral calcium has both in it. Might be worth a look to see if these elements could cause such a reaction. I know you can get silent seizures from too much lead but don't know if it's related to anything like this.

I agree that going to different medical discussion sites on the web is a good idea. I'd suggest other autoimmune sites, as well as anything else you suffer. Plus a blog of your own detailing your experiences so others can find it easily. I am sure there is SOMEONE out there who's experiencing the same thing and either wants answers too or has them. The trick is to find them.

I hope you get an answer to this, and soon. It's hard to comprehend how people can suffer this much in today's world with so much medical knowledge. The truth is, there's still so much medical ignorance, too, unfortunately. If I see anyone else mentioning similar symptoms, I'll alert you. Might be worth looking through old posts here as well as at old posts on other PsA sites. Someone out there has the key to all of this!

20

Hi Petunia,

These started before I ever took Coral Calcium, but that is something I never thought about. If the coral is toxic and these vitamins are still sold, then what else is toxic or tainted? Fortunately, I never noticed the miraculous difference these women claimed, so I didn't take it long then or re-take it when the wise Byrd Feeder told me about this.

The Rheum's first thought was severe tendonitis, I already know I have tendonitis, but severe, who knows!

Thank you for your insight, any ideas will be appreciated, no matter how 'far out'!

Hope you are having a good day!

SK