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my doctor has my head spinning with test after test and still nothing?

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Posted 11/1/2006 6:16 AM (GMT 0)
my symptoms began about a two years ago. I was sent to er with hives bigger than the size of my hand, covering my body . They were raised , red, warm to the touch, and itchy. Er doc dx as anaphalytic shock, to what i have no idea. the following morning i woke up with complete numbness in left hand, i had partial motor control,felt pressure, but it was that annoying "ants" feeling as when ur foot falls asleep. Well this tingling in my left hand cost me a lot, i had to undergo that nasty electrode shock test and some sort of circulatory test. That evening of the initial numbness i was preparing for an exam and the hives came back and brought blurriness with them. Its like i was trying to read through fog. I took this as lack of sleep and went to bed. months passed, still left hand numb, but no other symptom, my dr ruled it as a pinched ulner nerve,which made sense. about a year ago ,in the same exact order, 1st lesions...2nd the same numbness but less sensation, blurriness, and now a third~swollen joints. My left knee was dbled in size and sore to the touch ,but no brusing. My wedding rings had to be removed with dawn cause all of my joints in my fingers were redish purple and swollen. These symptoms lasted about a week. And reoccured at least once a month then slowly went away. Now, the symptoms still come and go in same orderly fashion but more systematic. I actually think i'm loosing my mind sometimes; i often feel like i have a wasp sting me and i react to it but there is nothing there, my toes,head,and some areas of my arms get the sensation of prickles;um.......kinda like the feeling of holding a sparkler firework and having those little beads hit your skin. I literally check my scalp for lice sometimes cause it feels like i have something moving my hair.(of course there is no lice or anything else like that) I was just recently accepted into the RN program ,which is very competitive, my GPA was above average of those in my class, well im no longer in my class. This past thursday we had our clinical skills testing and it was as though everything was one big blur, i couldn't think of anything. So i was then asked to resign from the program. That next night,friday, and since then , everynight i wake up soaking wet as though someone poured water all over me , but yet i am freezing. I have trouble sleeping, constant urination, sudden problems with my teeth, no bowel in 18 days, and i also have trouble distinquished a time frame. I don't remember if something happened this morning or three mornings ago. Am i loosing it, is it anxiety. I've already had an MRI = clear, and a lupus panel = negative. Somone please help me understand what's goining on. Also sorry for the long letter, it also takes me forever to get out what my point is , my husband is even beginning to think im cheating cause i can just be running to walmart to pick up milk and i seem to be in there forever~doing what , i haven't the slightest clue. If it helps in helping me figure out whats wrong: im 26 with one child. Thanks so much for putting up with my long "life story letter"
Posted 11/1/2006 6:52 PM (GMT 0)
Welcome to Healiing Well.

I'm sorry for all that you've been going through. I don't have any thoughts as to what might be troubling you.

I have not heard of MS causing hives. I am undx also so I could be wrong. Hopefully some of our dx members will be along soon to provide better info.

I can tell you that sometimes diseases take a while to fully show themselves. I know that doesn't help much but that is where I stand. I am waiting and watching until something definate will show up in the tests.

I wish you lots of luck and ask as many questions as you want. There are very good people here who are very informative.

Lysha
Posted 11/1/2006 8:05 PM (GMT 0)
Its not that the hives start out all of the sudden big. It seems its like it starts with that tingley sensation then i scratch and the more i scratch the more the redness spreads, if i leave it alone(which i know i should do) then it goes away rather quickly. This morning i've noticed something new. When i got out of bed it was though i had worked out yesturday, my muscles felt tight and my legs were cramping , still doing it now, and when i sit down it feels like someone has a crochet needle(dull) and lightly poking me with it in the inner thigh section. Doesn't hurt too bad just very annoying. Its as though the past two years my body was giving me warning signs of something and now this past week, it's just showin itself proudly.

thanks for ur reply ,
bugs
Posted 11/1/2006 8:41 PM (GMT 0)
Hey Bugs

Welcome to the board! I'm sorry to see all that's going on with u! I've not heard of hives with ms either, but have heard of itching. I don't think u'r losing u'r mind at all! I have felt those tingling things like the sparkler and the numbness and other things u mention. U said u had lesions?? Did the doc discuss with u where they were and what they may be from?? There are a ton of tests that need to be performed in order to dx anything, including ms. Do u have a neurologist or rheumatologists or other doc that's following u? Some very good advice that was given me in the beginning was to keep a journal. If u'r not already, note u'r symptoms and occurrance of them. On u'r next doc visit take it with u to let the doc see the pattern that may be happening. As Lysha said, the dx process can take quite a long time especially since it's largely a process of elimination. When all other possible diseases or illnesses are ruled out..then if the doc can't find any other reason for the symptoms and clinical findings he/she has, u may be dx'd with ms. Don't give up and try to keep up with as much of the symptoms as u can. Try to get copies of all test results including MRI's and any other such scans. These can all be valuable to u if u have to see other docs. Hang in there and ask as many questions as u like or need. We'll all be here to help as much as we can. Again, welcome to the board!
Posted 11/1/2006 8:58 PM (GMT 0)
Well my primary doc never called them "hives" , i only explained to her what they looked like and she dismissed it. The er doc said it was an alergic reaction so when i got home i looked up "rashes" on the web and the web pics of hives were similar to what i had. I would love to go to a neurologist but my husband refuses. He isn't to supportive. I was raised to honor my husband but i'm seriously thinking of making an appointment behind his back. These symptoms are really scarying me. As im typing right now, my pinkie of left hand is tightening up as if my skin is skrinking, hard to flex it. And it is becoming numb and that dog'on antsy feeling is back. hard to type, thanks for response
Posted 11/1/2006 9:24 PM (GMT 0)
Hey Bugs

Try googling 'hives multiple sclerosis' or 'itching multiple sclerosis' to see what u get. Maybe there'll be some info there.

I can understand how u feel. I too was raised to allow the husband to be the decision maker and tie breaker in the event we don't fully agree, but there has to be some consideration of the overall good of u'r family. U won't be any good to him or anyone else if u'r not well and can't function. I think u should see a neuro or at least u'r primary doc and let them run some more tests. Of course the decision of how u'll address this with u'r husband is u'rs, but regardless of that, u need to be seen. No one here can tell u what's wrong. We can only offer suggestions and supportive info pertinant to our own experiences. This can't replace seeing a doc. I think when u'r husband sees how things are and understands how it's all affecting u, he may prefer that u see a neuro or other specialists. U'r primary care doc can certainly order some of the tests and offer meds to aid in the symptoms relief, but eventually u may just have to see a specialists. Best wishes to u on this and please let us know how u are.

rhonda
Posted 11/2/2006 12:53 AM (GMT 0)
Hi Bugs,


I'm very sorry for all youre going through, how frustrated you must be! You're not crazy either, just feeling bad and not knowing why might make you feel that way smile Hives are generally caused by an allergic reaction or stress and sometimes is seen in some autoimmune diseases like Lupus. Its not something that is usually seen in MS though, nor is the joint swelling you are having. Since you are having some new things appearing it is possible that something might show up in the bloodwork now that didn't before. Maybe you could ask your gp about rerunning the bloodwork or referring you to a specialist. Perhaps if your doc refers you, your hubby might not object? Take care and please come back and let us know how you are doing.
Posted 11/2/2006 6:16 AM (GMT 0)
kimber

thanks a bunch for replying, you guys are wonderful. When i started my post i was expected maybe one or two responses, but not in the first day especially not so many. Im just not used to having someone pay attention,lol. My hubby is more interested in whatever seems to be going on around him and if there's nothing, (he's a 24hr on call deisel mechanic) he'll actually call work to see if anything needs to be seen about , he says that's why he gets paid what he gets paid, but i say it's a "vacation" for him from home. And the sadest part is you guys don't even know me.

I spoke with a physician who is a friend of my mothers and she seems to think that the first inccodent was anaphalactic shock and being that i have anxiety attacks, she said that my other symptoms point in the direction of autoimmune disease and perhaps i ponder on it which causes the hives to come out . And the swollen joints , she said may be R/T fibromyalgia being that my mother has it and my grandmother. But the other symptoms of blurred vision, scanning speech, flashing light when i look bilaterally, also she did a quick reflex test today on me.She said i have babinski(prob misspelled), um she did something with my hand ( held middle finger and my pinkie and my thumb went opposite, can't explain it) my eyes didn't accomidate to "swinging light", and also she made me stand with my feet together with my eyes closed~i almost fell, i thought it did this to everyone. She also pointed out to me that i lean my head to the right . I didn't even realize i was doing it, and since i spoke to her i noticed i was doing it again while watching tv, so much that my ear was almost touching my shoulder.
Anyone experianced any of these symptoms, i'd love to hear about it, thanks
Posted 11/2/2006 11:48 AM (GMT 0)
Did your physican suggest you really need to see a neuro? And perhaps also a rheumatologist? Lots of disorders of the central nervous system (MS is one of those) can have very similar symptoms, and symptons like that can also occur in things like rheumatoid arthritis, etc.

As a couple of folks already said, we can't begin to diagnose you here..only offer suggestions like.. "...work around your husband and see a neuro..."
Posted 11/2/2006 10:07 PM (GMT 0)
I understand that no one can dx me , why does everyone telling me this. I joined this forum to see if anyone has had these symptoms before, i've read other post before joining and seen alot of people just looking for similar symptoms. I'm sorry if i came across the wrong way, maybe this isn't the forum for me.
Posted 11/2/2006 11:34 PM (GMT 0)
I think everyone just wants you to feel better, sorry if anyone upset you sad I can relate very well to your anxiety issues as I've had it for years, even got hives on a few occassions due to stress. It seems you may have more than one thing going on as is the case with me as well. I have anxiety, migraines along with daily ice pick headaches and rheumatoid arthitis. Originally they though I had fibro because my bloodwork didn't show anything but as symptoms progressed they figured it out. I do have swelling in the joints and blurred vision but not much else you are describing. Whatever it is I do hope you get it figured out and start to feeling better. You might try posting on some of the other boards to see if you can get more input to your symptoms. We'll do our best to help here as well. Take care!
Posted 11/2/2006 11:54 PM (GMT 0)

Bugsndaisy:  Not knowing what is going on with our bodies is worse than finding out the truth.  Unfortunately, our bodies are very complex and can lead MDs down several paths before the right diagnosis occurs.  There are several problems which can give you the symptoms described.  Find the right doctor and make certain you're comfortable with him/her.  A doctor who won't listen is the wrong doctor.  I'm really concerned that you stated you haven't had a bowel movement in several days.  This is not normal and should be addressed as soon as possible.  This is your body's way of eliminating waste and can lead to complications.  There are also several digestive problems that can cause hives and constipation, so you may want to consult a gastroenterologist.  Until then, if you suffer from chronic constipation, you may want to ask your pharmacist about a stool softener.  Good luck!  If you just need to talk, give me a buzz.  I'll be out of town until Monday, so if you respond, don't think I've forgotten you.  Sometimes, one just needs a friendly ear, I know at times I certainly do!

Not an MD; just in med field and familiar with body's functions.

Posted 11/3/2006 12:08 AM (GMT 0)
thanks, for the past 3 months the bowel movement thing is just become normal, i can go 2-3weeks without , i've used everything from fiber supplements-enemas, nothing works. Then out of no where ,sudden diarhea. Im just to the point of thinking i'm just making it all up in my head, that's how the dr's make me feel. But thanks everyone for the uplifting comments.
Posted 11/3/2006 1:07 AM (GMT 0)
Hey Bugs

Awww..i'm sorry. I hope u don't feel we only want to send u to a doc and on u'r way. Everyone here just wants to make sure u'r getting the best possible care avail. We suggest different types of docs in an effort to lead u a little, but make no mistake, we do understand u'r frustration and loss as to what's going on. U'r world is being turned upside down and u need help making sense of it all. Please let us know how u are. That's what we're all here for and we want to help where we can. U HAVE come to the right place if u'r looking for support and helpful suggestions and we're glad to have u.

rhonda
Posted 11/3/2006 3:11 AM (GMT 0)
Gracie's Mom

No offense taken! :) Help is help and we're all here for the same reason.
Posted 11/3/2006 3:07 PM (GMT 0)
bugsy, soo sorry you are experience all of this at once, im sure its very overwelming. I too have had major bouts with constipation, the longest one time was 30 days. OMG what terrible pain. My husbands regular, is like every day to 2x's a day, me every 2 or 3 days and thats regular for me. If I notice its longer, i take a stool softener. And wow, the constipate then diarrea, yep I get that too. sometimes dont know from one day to the next. Its very frustrating.

Try getting relief on one symptom at a time, if you can eliminate a few you might feel better. I too would have some vision issues, so I went and had my eyes checked. Maybe some of the problems there, is you need a stronger prescription or a new one. I could relieve some of your stress and other symptoms by you taking control. I know it did for me. I was having problems went the the eye dr, and it was fine. So when it came time to a dr or neuro appt, if they started to say ok get your eyes ck'd maybe thats causing some of your vision or balance issues, i could say already done, look for something else. I also found that the more i took control and persistant that they find out what was wrong the better I felt. The symptoms didnt go away, but i knew i was doing all that i could to find out what was happening.

Early on, i had the scalp thing your talking about, to me it was like my scalp and hair were trying to crawl off my head, very annoying. I started taking trileptal and for some reason that went away. Sometimes I take one benydryl when my antsy, and skin sensations start acting up really bad. It does seem to help. I dont know if its the med or me just beliving its helping. But as my neuro told me, if it makes me feel better and an approved drug its ok, in small doses. he said sometimes just the piece of mind is all we need for a symptom to go away. i love my neuro. lol

well i think ive rambled on enough. and know you are not alone in your quest. we are here supporting you for me my dx of MS, is well rather a blessing, at least i know what it is and can take some control. I felt the worst when i didnt know what was wrong with me, and felt it was all in my head. and many of us know exactly what you feel regardless of if the symptoms match what we have or not. the not knowing is what makes us all the same, at some point we all were at that same spot you are. what makes it easier is knowing your not alone in this journey, there are people the understand and care whats happening to you

see more rambling, but thats what i do hehe. keep us posted and keep your chin up, you can get through it
cyndi
Posted 11/3/2006 7:11 PM (GMT 0)
Gracie's Mom

what is lyme/STARI/Masters, i know what lyme is but sort of confused by what the other two might be?
Posted 11/3/2006 10:41 PM (GMT 0)
Hey folks,

I'm very sorry to hear about all you're going through, bugs. My dx happened very quickly. If they had to find me with MS I'm glad they found it soon. I didn't realize until I started reading this forum that a lot of feelings that I have are really symptoms of MS. I always get tingly feelings in my legs and feet and in my arms. I always look down to see if maybe a spider or something is crawling on me. I've never mentioned this to my neuro because I just thought it was my imagination.
Also I was recently in the hospital for a low blood count and my arm just started itching so bad and I scratched so hard the nurse said it looked like maybe ihad busted a coupl carpusols (spelled wrong i know). Then my hand felt tingly like something was crawling on it. I never associated these with MS. Thanks everyone. I'm learning so much.

mesea
Posted 11/5/2006 8:11 PM (GMT 0)
At last I have found a forum that talks about real things going on RIGHT NOW. I too have many of your symptoms. My biggest complaint is memory lapses & that my world around me keeps shifting like it's off balance on an axes. I have had in the last 7 days blood work (normal except slightly elevated WBC) CT scan, EEG, MRI, I've seen my neurologist who did all the physical motor control tests & even did a breathing test that brought on a partial seizure 2 times ( 1 on one day & another the next at my EEG when asked to breath again). My Dr as reffered me to an Epilepsy Specialist for Nov 13 & then I will see him again that same day. Since then I have had some new symptoms. I thought my dizziness was due to having new contacts after not having worn them for 2 years. My opthomologist said that was not the case, so did my optomotrist & the neurologist. I have read many disease symtoms & illness since then to help me remember what "funny" things I have had to tell my Dr (incase is it relivant). My symptoms started with difficulty with my vision. I am DOT Certified for driving, that is my occupation. I noticed slight blurred vision a few weeks ago, but dismissed it as being tierd. So I cut back on my hours. Then I got my eyes checked, then the dizziness came, then unconcious awareness, tilting world, nausea and dry heaves. This was all in the past 3 weeks. I went to the ER where I had my blood work & CT scan on Oct 30th. The neurologists (3 of them) said I was no longer fit to drive due to the unconcious awareness spells. They (neurologist & attending ER DR beleives them to be partial seizures where there is no body movement at all & my eyes are open. Finding my family historry has been somewhat hard as we are not close. Although I did find out last night that my aunt on my father's side was checked for MS 45 yrs ago. Nothing more was said about her case. I believe what you are saying is really happening. I know that at times you may even feel you might be wondering about things in the past i.e was this normal or was that & what about this.... It's so darned frustrating to wait. We (the patient) hurry to get our tests done to just to find out we have to wait some more. All the mean while different things are coming up daily or disappearing & we think, oh, it was nothing at all. I don't believe that my Dr is going in the right direction (epilepsy). I think it's more than that. I refuse to sit & wait for my Dr. to help me. I WILL find someone who can help me. I live near Rochester MN & that's where my doctors are at the Mayo Clinic. Not all bodies show symptoms the same way all the time or even in the same order, just remeber that>>>>> Keep in touch..
Posted 11/5/2006 11:54 PM (GMT 0)
Hey Chantelett

Welcome to the board! I"m sorry u'r dealing with so much, but it's good u'r having tests done and are seeing good docs. Many things can mimic ms and u can be led down many paths before u finally get a dx of any kind. Try to be patient and continue to persue things until u get an answer. I was given some very good advice upon coming to this site and that was to keep a journal. U really need to log all that's happening so u'r docs can see what the symptoms are and any patterns that may develop. U may not feel u'r docs are on the right path now, so talk with them and get try to get the whole pic from them. There may be (and usually is) other/more information that u'r not yet aware of that's leading them in that direction. Remember to ask for copies of all the tests results u've had and will have in the future. If u do decide u'r docs aren't right for u, u'll have that in hand to present to the new doc and will decrease the chance of repeat testing. Best wishes to u and be sure to ask all u'd like and let us know how everything goes for u.

rhonda
Posted 11/6/2006 5:57 AM (GMT 0)
Gracie's Mom


I do appologize for the delayed reply. I have read all of your post and i thank you for all of your imput.

I was just re-reading my posts, as some of them did not quiet register the first time reading them. Funny some of the post i read tonight seems like it is the first time reading them, although i know i've read them already, if that makes any sense.

My question is this: You stated in an earlier post that your daughter and i share similar symptoms. I hate to be digging here, but could you be more specific. What symptoms does she have?

I was watching mystery diagnosis tonight and i felt exactly like one of the quest on that episode. He was expressing how the doctors and everyone around him was beginning to make him feel like he was just exagerating these symptoms and have become a burden to his family. I feel like all i do is complain, when all i am doing in all actuallity is simply letting my husband know what is going on with me, but i just get a knod of his head and that's it. As if "there she goes again, just complaining somemore". Am i the only one who feels like this? I checked out a book at the public library on autoimmune diseases and it seems to me that they all have very close symptoms, how to tell them apart? I know that doctors are the only ones to give dx, but after watching that episode tonight, just as every time i watch it, these pt.s are misdiagnosised several times before they have finally reached what is actually wrong with them. Part of me thinks that i am scared of the dx, but most of me will be relived to finally know what in the world is wrong and that i am not imagining all of this. But the biggest fear i have is going to dr. and him telling me yet again to have clean results from yet another test. I don't know what to think. Ok im rambling as always . Sorry to use u guys as sort of a "venting" page.
Posted 11/6/2006 10:22 PM (GMT 0)
Hi and welcome to this great forum.
I haven't been here for some time and when I read your post I felt I should respond. I was in hospital for 3 weeks trying to get rid of the most dreadful rash. Nobody could give me an answer to why I had it but boy did it leave horrible blotches all over my body. The ants crawling was one of my first symptoms then itch, I couldn't stop scratching. The sheets on my bed were covered in blood ( scratching in my sleep ). Almost drove me crazy! As the months passed I ended up with the Neuro and MRI and lumbar puncture and still no real diagnosis. I don't think there are any parts of me not affected by whatever it is. I had numerous lesions in my brain but my lp was clear. Still have all the symptoms and if anything I am getting worse. I have been referred to a large hospital but can't get in until January next year. I felt the first "ants sensation" again just yesterday but I haven't broken out in lumps....yet! I immediately tried to cool off. It was very humid and hot here yesterday.
Do you find that heat makes the itch worse? It affects me a lot. I have to get away from the heat source and try to cool off. It leaves me weak, exhausted and out of breath.
I hope you can find a solution or at least get something that will calm down the itch. I have high blood pressure and was taking Avopro. Had been on this medication for 3 years. All of a sudden my body reacted to it so now I take different medication. I think that my itching is not due to just one thing but rather is a combination of different reactions to medication, stress, heat, menopause, depression etc.
Cocoa
Posted 11/6/2006 11:01 PM (GMT 0)
Dear Chantlett:  Glad to hear someone like me! yeah   I'm so used to helping others in med/field that I was frustrated and thrown when I had to be on receiving end!  Imbalance and cognitive thinking was and is very distruptive to my daily life.  I can no longer work in the respiratory field and my volunteer work w/asthma pts is almost at a standstill.  I never know if the words I'm thinking are actually going to come out right or not.  People are always finishing my sentences or looking at me when I'm desperately trying to find simple words like "mall" (finally called them "you know, the little stores in a group").  This is hard for me since I'm used to giving speeches on asthma mgt w/o any note cards, just from the heart.  It may still come from the heart, but the brain sure takes a detour. tongue    I can laugh at it now, because it's easier to deal w/things with a sense of humor because it releaves stress.  Do you ever have moments where you don't recognize places that should be very familiar or articles you use in work seems as if you are looking at it for the first time?  This is very unnerving ... almost like alzheimers, but neuro states it is not.  The location of PVL causes all my problems. Physical therapy (started today) is giving me a new lift as finally it seems that I'm on the right road.  Occupational therapy was very helpful in helping me find things that will make housework, etc easier causing less fatigue.  Spent afternoon fatigued & sleeping due to P.T., but worth every minute.  I now have a home program, too.  I'm waiting to see if I am eligible for social security disability.  I've heard so many horror stories.  This is a little unnerving since we went from a 2 income family to a one income w/son starting college soon.  I go back to neurologist Nov 21st.  Hope to have more answers on prognosis.  I feel like humpty dumpty waiting to be put back together.  To occupy my mind and time, I'm writing a children's book for my g'daughter.  When my kids were small, I wrote several stories for them and to this day, they remember them and not the ones I checked out at the library.  Good luck on your diagnosis and tx.  I found that getting frustrated just makes cognitive thinking and imbalance worse ... remember that laughter is the best medicine.  Keep in touch and good luck on the seizure tx (so much is available so I hope they find the right one for you soon).

Posted 11/8/2006 6:49 AM (GMT 0)
sorry i hadn't gotten back with yall sooner. I'm still working on my husband to give me the ok to go to the neuro. Which i understand his reasons for wanting to wait. My sons birthday was today 7th or yesturday cause it's after midnight, plus with christmas around the corner, he thinks that "finacially" we should wait until after the holidays. I can completely understand that cause with my being sick and all, his income is the only income we have right now.

I'm doing fine . I had one weird thing happen to me this evening. I was changing a light bulb. With my arms raised over my head trying to unscrew the little screws which hold the light fixture over the bulb while holding the light fixture steady, i actually began sweating and my hands were shaking. I actually couldn't feel the screws for a sec or two that i was holding in my hand. My fingers became numb but its as though i felt pressure in my finger tips as if someone was smashing my finger tips. When i was complete, before i got down from the stool, i literally had to bend over to get blood rushed back to my head. All i was doing was changing a light bulb! When i got down from the stool i felt as though my face was red and i was all shaky all over, i even snapped at my lil boy when asked me what was wrong. I felt horrible after that, but i felt aggrevated and didn't want anyone to speak to me cause i felt like i couldn't interpret what they were saying much less answer him. Does this make sense? Well sorry to just write and be complaining, how's gracie doing? I'm 26 , but she began being sick young and missed out on so much in her childhood, and here i am complaining. Tell gracie she is in my prayers everynight, i feel so petty cause i maybe get sick for a few days out of each month and she is dealing with this on a weekly basis. I had a friend who was in an accident and was pronounced dead for 13 min and suddenly opened her eyes and her vitals were back to normal as though nothing had happened. (this was four years ago) For those 13 min her mother refused to leave her bed side and was praying aloud in the hospital............I'm not trying to push my religous beliefs on anyone here and i appologize if i offend anyone in advance.........but man may not know a cure or really don't understand why we are sick.....but I know God is the reason i have my friend today and i know God can perform miracles for me, gracie, and whoever else believes and has faith in prayer.....

Sorry for such a long post i just felt i had to share that.
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