me

[Jena]

didn't know what else to title it.

this isn't about my drama junk with-difficult child or easy child or lwt's with my dad or my pain in the butt husband.

i've been really struggling lately physically. i have for years on and off. doctor's if you remember had it pegged as lyme, than i had lung disease lol. jerks. than it was rheumatoid arthritis. well all negative on those.

we are fighting to get isurance for me husband and easy child yet he makes too much yet too little for us to pay for it. confusing.

i go to bed at night and wow the nerves i guess in my legs start up on certain nights, last night was bad. they move with-o me moving them if that makes sense. like shooting pains. than the swelling and joint pain in my kness my arms neck.

past few years i forget where i am. sounds absurd or anxiety related. yet i'm totally calm usually when it occurs. yet i'll be driving like yesterday to difficult child's hospital appointment. and get off highway and have no clue where i am, or where i'm going. so i leave my appointment. book on front of truck so i can always glance at it or i'll ask difficult child oh you looking forward to today than she'll usually say i hate the hospital than i'll remember where i'm giong.

ill drive thru town and itl'l happen to me. suddenly nope total loss of where i am. than the fun vision thing. out of nowhere it goes blurry. i tried to ride it out, i always stay calm. it does subside. the shooting headaches, or the crackling sounds in my head when i move it a certain way. or lately the stuttering, i try to say what's in my head and it comes out all jumbled up.

today i woke up same, feeling like truck ran over me, etc. took hot shower it only gets worse.

so, i'm clueless doctor wants me to head to nuerologist for an mri. and weird thing is i'll have an awesome few mos.where i'm feeling great than outta blue it'll hit for a period of time than it goes away again.

i'd have to say the memory loss for me is the worst because i really don't know where the heck i am.

any of you guys ever have this junk? it's so annoying. started about 5 years ago, and it just seems to be getting worse. husband thinks im nuts wheni repeat a story like 5 times over in one week and says when u tell it your so excited because you to you its the first time and brand new.

 

[Josie]

What made them say Lyme Disease before?

 

[Bunny]

The vision thing and the shooting headaches could be migraines. I know somepeople who have vision issues as a symptom that a migraine is coming and they take whatever medication helps it before it gets too bad.

Sounds like you have alot going on. I hope it gets better.

Pam

 

[DammitJanet]

Im gonna say Fibro. That stuff about suddenly coming out of a fog while driving is related to depression or ptsd too. Its one of those de things. Depersonalization or derealization ...something like that. I get that a whole lot. Its like...oh...Im at my driveway? How did I get here? Or Im at the store? Why am I here? What am I supposed to buy?

I also have horrible memory issues and the word thing. I am the queen of whatchamacallits and thingamajigs. I am forever pointing at something and going...that...that...that thing...right over...over...over...there...!!!!!! People really should read my mind for once.

 

[HaoZi]

I've always had memory issues, actual anxiety attacks are more recent for me and I forget more when I'm stressed out. Some of it also sounds like restless leg syndrome, though certain vitamin deficiencies/overdoses can affect the nerves as well. Does your state have any kind of sliding-scale insurance available? You certainly need to see a doctor (or a specialist or three) about this. Vision thing... along with migraines could also be blood pressure or changes in your eyes as you age like macular degeneration. I'd start with the eye doctor (even the one at Wal-Mart) for that, just to rule in or out a few things. Just being overtired can also do it, and with your schedule being all over the board it might well contribute.

 

[Jena]

janet that's funny. lol i laughed when i read that.

it's been happening for years now. last night i was walking and walked into a wall and lost my balance lol. husband looked at me and said when are you getting the mri done?

i'm treating all of it with a whole lotta vitamins right now, and adding in some herbal junk. a friend of mine is holistic so wheni have a question i text her on it. anyone else have this and wanna share what they take?

doctor thinks it' ms. has said it for years now to me, keeps telling me to get the mri done. i guess i just kinda nicely forget to go because well umm immaturity??

did the eye doctor i know my issues there, had blood work it's awesome doctor said so good, i dont' get migraines anymore like i used to. my blood pressure's great. it's hard to explain. it comes and goes. some days i feel great, truly especially when weather went from really hot to cool. wow i felt great. than i adjusted. the blurred vision comes and goes and seems to go hand and hand with the loss of balance, kinda forgetting where i am at times, and the shooting pains in legs suddenly.

omg the stuttering the kids find funny. also comes and goes. ill have a sentence in my head and it comes out either completely backwards or words jumbled up or it takes me a while to land the plane.

right now im popping alot of fish oil, vitamin 6 and 12, vitamin e, a few others acaoi berry i just added (not for weight loss though). i'll tell you the stuff i take helps so much during day moodwise.

 

[Jena]

oh sorry they thought lyme because i have swelling at my joints. my knees are really bad, ankles and i have nodules on me now also with alot of joint pain.

 

[svengandhi]

Have you checked carefully into the vitamins and supplements you are taking? Not all of them are approved and some could have ingredients that are harmful.

Also, the leg thing at night might be restless leg syndrome. Eating bananas can help but there is a medication for it which my mother in law takes.

What do you mean by nodules? I have RA and at times I have had alot of swelling that felt and looked like nodules, especially in the knees.

Good luck.

 

[HaoZi]

Whoa, how much fish oil and what brand? You might want to check into the possibility of mercury poisoning, too. Normal blood work doesn't check for things like that, and you can OD on vitamins and other supplements.

 

[Jena]

no, lol. i've had this stuff for years going on with-me. it is def. not that. i take the allowed dosages, i'm not just filling up on them with-o checking allowed dosage although if it made me feel really good i might pop more than the allowed amt. ha! just kidding!

i take the allowed amt. that's exactly what i get the nodules, which is why they tested me for ra, or arthritis, diff types all negative. i have bumps on me my hands, my knees are totally swollen with nodules, etc. feet have them. joints are bigtime affected. pain, stiffness, hurting. they did do alot of blood. which is why he said ok mri next. i'm big on herbal and vitamins. i wanted to do that for difficult child yet she wouldn't work with-me alot of those pills are like huge horse pills. back when she was swallowing she said are you crazy??

 

[HaoZi]

http://www.wrongdiagnosis.com/sym/joint_swelling.htm

 

[Mattsmom277]

Hmm, what are they looking for in terms of a MRI? And how certain are they it wasnt' a false neg. for lyme? I am glad they are sending you to a neuro. If they rule out individual causes for different things going on with you, neurology is probably the next best avenue to explore. I agree with some other posters ideas: fibro, lyme, etc. I had very similar things going on and with me it turned out to be MS. But it could have been others listed in this thread, and even the vitamin deficiency which can cause all those things too. Hope you find out whats up so you can get turning the corner. (((hugs)))

 

[susiestar]

I am so sorry that you are having so much pain. Living in pain really hoovers. It sounds like several things are going on. I would guess some type of arthritis along with fibromyalgia. The vision issues could be migraines. Or MS is a possibility, esp with the shooting pains as those are nerve related.

You NEED that MRI. Bad. PLEASE PLEASE PLEASE get it. I know it is hard to face this stuff. If you figure out what it is then you can treat it and possibly keep it from getting worse.

One thing that may stand in your way is all that the kids need, esp from you. You have to take care of Jen because if Jen suddenly is in the hospital or, Heaven Forbid, dead, what will happen to your kids? Your oldest will not have you to be there when she ditches the guy she is dating and has to face all that hurt. Your difficult child will likely regress bigtime and she will end up with her father and it is unlikely that he would EVER get help for her unless child protection forced him somehow. How would her life be if she didn't have you to advocate for her?? If something happens to you, your kids are going to be in a world of hurt of so many types of pain they cannot all be named.

So taking care of Jen when she is having really SERIOUS problems like blurry vision, forgetting where she is, shooting pain that debilitates her, etc.. because these can all be signs of life threatening problems.

I know you probably will ignore me, but at least think about what I have said. I worry about you! It is really IMPORTANT to find out what this is. There are a TON of types of arthritis. They are usually divided into two main categories - rheumatoid and osteo arthritis - but they all have different symptoms.

There are medications that can help. Even ones that can halt or slow the progression of the damage that is happening because the disease. Forget the fancy hair color - you are WORTH the cost of the tests and taking good care of yourself. You're worth it.

 

[Mamaof5]

Im gonna say Fibro. That stuff about suddenly coming out of a fog while driving is related to depression or ptsd too. Its one of those de things. Depersonalization or derealization ...something like that. I get that a whole lot. Its like...oh...Im at my driveway? How did I get here? Or Im at the store? Why am I here? What am I supposed to buy?

I also have horrible memory issues and the word thing. I am the queen of whatchamacallits and thingamajigs. I am forever pointing at something and going...that...that...that thing...right over...over...over...there...!!!!!! People really should read my mind for once.

I am going to say Fibro as well, possibly with a co-morbidity of myofascal pain syndrome IF there is a specific symptom that Jena may have. In MPS around the fascal (not facial) sheathing around the joints you will find pea sized "bumps" this is the damage done by the immune system attacking the fascal sheathing, leaving scar tissue that presents in these "bump like" nodules around joints and thinly skinned areas.

Not all MPS patients get this symptom right away though. I have fibro and MPS (also referred to as myofascal syndrome). These two syndromes are of themselves separate illnesses however have a high co-morbidity rate. CFS (chronic fatigue syndrome) is another co-morbid syndrome with high co-morbidity rates with Fibro & MPS as well. Lyme disease should be absolutely ruled out along with thyroid issues and RA, all three mimic FMS (fibro) CFS and MPS and vice versa.

Osteoperosis also mimics the above and should be ruled out with an isotope radioactive bone scan. Some cardiac conditions can mimic all of the symptoms Jena described as well so cardiac health should be checked as well. Restless Leg Syndrome (what Jena described with her leg issues at night) has a high co-morbid rate with FMS/MPS/CFS too! Mirapex can treat all 4 syndromes (nuerotins, b2 blockers and pregabalin, gabapentins are all used for FMS. MPS, CFS & Restless Leg Syndrome equally, some are off label use however).

 

[DammitJanet]

I was going to come back and mention MPS but see Mama5 beat me to it when you mentioned the nodules.

The coming and goings of this really good indicate fibro because you can have good and bad times with it. Not everyone has severely bad chronic episodes. I also have degenerative joint disease which just adds into the fun. All my joints are eating away at themselves. What a treat to live with. I think if all I had to deal with was the fibro, I would do the happy dance. Although to be honest, if Tony sticks his elbow into my upper arm ONE MORE TIME while he is sleeping, I think I am going to cut it off! One of my most tender and sore places on my body is the upper, outer part of my arms and invariably he manages to poke me there every night! I feel like I have bruises from baseball bats every day. Sigh.

That is fibro.

 

[Jena]

mamma of 5 so what are you doing for it? That must of been scary i'm sorry. do you take the protocol for it, or do you do the herbal homeopathic stuff? not life threatening yet still a scary disease and well i'm sure you know the deal.

 

[Jena]

Janet what do u take for it? and yea men are a pain in the butt when they sleep!

susie - i am listening and i will go. just been umm kinda busy around here lol. it' isnt' fibro. i had that checked also. thing is often i feel GREAT. it's like in waves sort of thing.

 

[Mamaof5]

mamma of 5 so what are you doing for it? That must of been scary i'm sorry. do you take the protocol for it, or do you do the herbal homeopathic stuff? not life threatening yet still a scary disease and well i'm sure you know the deal.

Mo medications for me at this time. At 31 no general practitioner wants to touch me medication wise and keeps trying to send me to a 3 year waiting list for a rhumatologist. Isn't that nice?

I do use alternate heat\cold. Voltaren (diclofenac 11% emulsion gel, it's over the counter here), Tiger balm for hands and suffer most of the time. I use natural things like arnica gels as well, glucosamine and I'm trying to get a new family doctor (wait list of 2 yrs and counting now, very bad shortage of doctors here in the small town I live in).

Naturopathic health band and magnetic bands cut some of the pain but not all of it. Some days I can't even roll out of bed but have to anyway (5 kids, 2 schools, 1 daycare - no avoiding it)

I'll get back here and post more ideas for helping with pain and fatigue when I drop off those kids at their respective schools today. Hang in there Jena!

 

[Mattsmom277]

Jena, on the chance that it might be MS, I have some small ideas that can help to a degree. They are just as likely to help even with another diagnosis but specific to a possibility of MS, I'll just share from my experiences.

Sounds like heat affects you. Same here! No matter how great a day I'm having, hot showers? Out. Likewise really cold showers, but hot hot showers are a no no. I tend to try to shower in the evenings before bed as even a warm shower (I refuse to freeze while showering even though I won't put it really hot) at times can bring on fatigue and soreness. Then if I'm really sore, a Voltaren type creme is a great recommendation. I haven't tried that specific brand, but I do use a few others depending on what i think might help soothe me a bit. A535 stinks and heats up briefly before working deep into muscle groups. (Personally love the smell but really is a "only use when not going out on the town" creme lol) I also use Aspercreme, which doesn't give a burn when applying but does get deep into the muscles with no odor. After a bedtime shower and the creme working into the tissues, I can often relax more to get a better night sleep which goes a long way toward helping the next day with stiffness and pain.

I allow my body to have a rest through the day if I feel myself waning. Sometimes it is missing words or jumbling a sentence that alerts me I'm waning, before my body itself starts sending me that message. Often a nap for an hour, or even just a quiet room to lay down and read or watch a t.v. show, can offer a body rest enough to put me back on track to finish my day with less problems. Ignoring these things throughout the day in the past and not doing something to listen to my body and heed its warnings, usually leads to increased pain or spasms or nerve pains, worse speech problems and more vision issues. When I finally realized I wasn't going to be a martyr anymore, and started heeded my bodies signs for a wee break, it helped me a lot. Not a magic solution but definitely I have learned my quality of life improves substantially from giving up the naive idea that just pushing through it all with a stiff upper lip was somehow a strength of mine. It led me to worse problems lol. Now I make no excuses or apologies, I just take care of myself for a time, then get back up and at em.

The blurry vision thing, even though MRI's etc are very pricey, can you possibly find the cash to go for a new eye exam? Even a good eye exam in recent history can have a different result when blurry vision is creepy in. When my vision is really acting up, I pop in to have a quick and specific couple of tests done, including pictures of my optic nerves. Best results for possible problems are right away when the problem occurs. The optic nerve pictures are not pricey and even if budget is too tight for more testing, most good eye docs will let you come in for just the optic nerve pics when problems with blurring etc are cropping up whilst awaiting further neuro testing.

Sounds like you have a good grasp on vitamin supplements. Just a small word of warning about taking upper level recommended dosages, some people, many really, can't handle the highest dosages. Everyone metabolizes differently and for some the highest doses can be harmful even when it is generally considered a safe level. You did not mention Vitamin D supplements specifically. This is a definite leading cause of vitamin deficiency related neuro issues, and sometimes lab results are misleading with Vit D. I was also told by specialist that for some people, even if lab levels show in normal range, if its in the lower range OR the very upper range, it indicates for THEM, that the numbers are in fact not okay for them. For some, too low leads to neuro deficits that very closely mimic several other more serious diagnosis's (including MS type symptoms). Likewise with levels in higher range of the normal spectrum, for some it actually indicates a toxic level. If you have any labs that tested for Vit D and the levels are not clearly in the mid norm range, it can indicate a chance to work on that to possibly rule it in or out. Lower end, Vit D supplements. Upper levels, speaking with doctor about ways to get a healthy level but bring the levels down a bit through diet etc. I was told by several specialists that long term levels of Vit D deficiency is often a unknown cause of serious neuro issues, and that often if it went on long enough, once levels are brought to better level, sometimes some neuro issues will permanently remain. Thus making careful monitoring of Vit D levels really important when having neuro issues. I was also told that many with things like MS, do also have coinciding Vit D issues. Definitely overshadowed by the more popular knowledge of a need to keep B12 levels normal.

Hang in there, and I hope you get some serious testing done soon. And I'll hope there's an answer that involves a remedy that can get you back to feeling 100%.

 

[Marcie Mac]

SO made me go to the doctor last year because he felt I was having way too many what he calls blond moments. Words and sentances not comming out right, or using the wrong words. Driving and not recognizing where I was at. One night I dropped Dan off at a friends house which was only a left turn at my street and straight up the hill a few blocks. Comming back I had to pull over because I had not a clue where I was at, and had a panic attack - have been going up and down that road since 1985. Zoning out of a conversation when he was talking to me - I heard him talking, but couldn't respond immediately. Falling down in the driveway and not knowing what happened and why I was on the ground. He happened to come out a minute later as we were supposed to go somewhere and said what in the h#ll are you doing. Told him I tripped over something and he said thats it, am making you an appointment - there obviously is nothing there for you to trip over..

He was worried I had a stroke - did the MRI and my brain was functioning fine. Turns out it was stress and anxiety. Which to this day I have a hard time believing. If I was going to stress out, it would have been years ago when Dan was spending most of his time either in left field or jail, and SO was at the worst of his illness, not just out of the blue. But was told stress can play havoc with your body, mentally and physically, and even just a little bit will cause things to go haywire.

Marcie