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I Need a New Body!!!


Sunfish
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so i've been having some not so good new symptoms the past few days. since monday morning non-stop. before that it had happened a few times over the past few months but only for a few hours at a time. now it's not going away. i have pins & needles/tingling/electrical "shocks" of sorts in most all of my body. everywhere but my trunk and my head. i wouldn't call it pain but it is SO uncomfortable. and i'm definitely weaker than my norm....usually my strength is okey dokey. i've had pins & needles & some numbness for a long time now in hands/fingers/toes/feet/calves but never non-stop or to this degree. and my vision is a bit blurry too. something i was pinning on the adderall that i tried recently with no luck but have since stopped with plenty of time for it to be out of my system (but yea, i can eat again :) )

and yes i've talked to the docs. several of them. my primary wants me to see the neuro who is being a ______ (fill in the blank, made worse by the fact that i originally really liked him). he's now ignoring both me and dr. grubb's letters & phone calls. we did try fluids and it did nothing for me (though at least i have a good outpatient set-up to get them now which doesn't include the ER). dr. grubb thinks my neuropathy may be progressing and bringing on the new symptoms. i was hoping they could be b/c of low B12 which we've recently discovered but no one thinks so. i'm hoping the B12 shots i started will help SOMETHING but i'm definitely frustrated (can you tell?) and the fact that my B12 is so low and my potassium levels keep dropping and other blood levels are semi-low has us wondering about additional GI issues again....possibly celiac.

i've had other wacky bloodwork as of late too...high Anion Gap, low CO2, low BUN, some other random things i'm forgetting. i've looked it all up and know that it can all mean lots of things or not much at all since i've never had issues with any of it previously (except for the potassium) the general consensus is that my body isn't too happy in general.

dr.g wants to try some new meds for the pins&needles/tingling but we both realize they could make me worse rather than better, especially since my last few med tries have been more than a bit challenging. so he wants me to try to get through the semester first, aka finish up my two papers, which i want to do too but it is SO hard right now as i have a hard time typing or focusing on the computer for any amount of time. this is taking me much more effort to write than my norm as my fingers keep slipping onto the wrong keys.

i made it to my last class today and could hardly keep my eyes open in class & was visibly shakey & could hardly get my wheelchair in & out of my car, something i've never had problems with. it was my first time out of my apartment all week other than the IV trip. i may have to take an incomplete in one class b/c the prof isn't sure she can grade my paper on time since it wasn't turned in this week; when i picked up the incomplete form today a support services lady had the audacity to tell me that taking incompletes is a bad thing that only gets people into trouble. as if i WANT to be taking one! and what business is it of hers anyway?? i'm sure some people abuse them, but come on.....i'm fighting SO hard to be doing the school thing at all and if i have one incomplete that will be taken care of long before next semester starts & largely b/c of the technicality of my prof not getting papers graded fast enough (by her own admission) then i don't need a lecture on it.

ggggggggrrrrrrrrrrr. ggggggggggggrrrrrrrrrrrrrrr. gggggggggggggggggrrrrrrrrrrrrrrrrrr.

and to top it off i found out today that i have to pay the $50,000+ back to the army from my college scholarship obligation that i obviously couldn't/can't fulfill. there's A LOT more to that mess than the money that i won't go into; by no means did i do everything right in the midst of things years back but i really did NOT need to get that notice in the mail today.

as much as i'm generally a positive person my body's downslides are not following my mind's determined lead. i'm not having ups and downs and haven't for over a year now...the ups are all but missing. the whole "it can only get better from here" attitude isn't working b/c more times of late when i think things can only get better the opposite has been happening. primarily physically but otherwise as well. and it's getting SOOOOOOOO old.

ok. sorry for the lengthy vent.

anyone else have such major issues with pins & needles/tingling/shocks body-wide?

a very very tired me...

:) melissa

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Hi Melissa,

I had a lot of pins/needles/electric shock sensations years ago when all of this started with me. No one ever could explain them, but they did eventually start to subside on their own. I do hope the same happens for you.

Michelle

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I think this should just be a venting week, lol. I can relate with the numbness, etc. The other day I was paranoid becuase when I woke up my right arm felt like it had been shot up with lots of novacaine, weird part was that I wasn't even laying on it or anything...hmm?? It took me a while to get the feeling back in it, to be honest I was very scared. I have a hard time feeling my arms and legs most of the time. If it's cold out I def. won't feel them. Even in the warm heated house I am in now with thick socks on I can't feel anything in my feet. I won't try the "it can only get better from here," because for the time being it doesn't do much. I had an aweful day if you had seen my post earlier. What really does help is thinking about the ppl who are worse off. I don't mean to sound insincere, but that is what made me feel better and decided that atleast for the rest of today I was not going to let POTS kick my butt. I hope you have a better day tomorrow and keep us updated! Good night :)

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ME~~~~

hey girl! I can totally relate to the pin and needles feeling.. I get it alot in my left side of the body..primarily in my hand.. and from my knee down to my toes on the left leg.. nothing relieves it.. it tends to go away on it own.... it is very annoying I know...

Also I get the electricity feelings..when I am feeling syncopal or having a rough time with pots.. I will often feel like there is electricity surging through me head.. from one ear tot he next ear all the way across my head.. the sund resembles a cross between a very load humming and the sound that electrity makes when it .. when a elctrical wire hits water.. does that make any sense?

also if I have a bad syncope spell..I will feel like there is electricity surging through my body..mostly head arms and legs...

I'm sorry that i dont know what casues it.. ro how to stop it.. only that i can relate...

I really hope that you start to feel better soon!

I wish I had words of wisdom for you.. I'm in the canyon myself.. and just wanted to let you know I'm thinking of you.. and hoping for better times ahead...

hang in there melissa!

Linda

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I too have the pins/needles, numbness and plenty of other odd sensations nobody seems to be able to figure out.

You definately have a lot going on so I hope when the semster is over you can take a much deserved and needed rest!!! I also hope you will feel like doing something fun and relaxing at least for one day when you get your break (preferably many days though :) )

I wish I had words of great comfort but I don't.

I do understand about all the insurance, school loans, govt red tape etc etc though and it can be really AWFUL especially when you feel so lousy!

I'm sending a BIG HUG your way

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YEp, those pins and needles are familiar. I know I have spinal problems, but I get all kinds of weird sensations that I can't easily account for with the spine issues. I always just chalk it up to my body being so wacky.

I'd have probably verbally thrashed the lady who gave the commentary on taking an incomplete. BTW, one of my professors was actually HAPPY when I took my incomplete--he really like the project I was working on--he left the decision up to me. When I told him I'd take the incomplete so I had extra time to more thoroughly get the project done, he was excited and told me that it was his preference too, but he didn't want to influence my choice beforehand. Try to let it go as the lady who gave you the paperwork isn't reallty involved in the process. I have 3 incompletes right now. The one above will be fixed this week...and the other two will be done in January. Do what you need to do to get through school.

Boogers about the army stuff :( All I can say is that I owe more $$ than I can think about at any time b/c of my loans for my Ph.D. program. If I stop to think about it, I wouldn't be able to function.

Nina :)

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I get them too, and am sick of going to drs, as they say nothing is wrong. My latest is that my optoneuro eye appt was completely normal, and I felt pretty nuts being there. I feel there is so much wrong with my eyes-floaters, shaking, pain, muscle pulling, you name it. Whatever, I think I have just decided that I have a wacky body that has wacky symtpoms-which can be anything, and that is just the way it is. I am going to try not to worry about them and just know that it is propbably just something going on with ANS. I have accepted that my body is very different and will not work or act the way as most people's. I am really trying to accept all these weird sensations as part of POTS and not think twice (well you nkow what I mean) about them. I notice so many times that if one thing is not goign on it is another. My eyes were better, and then it came back, but the sensation is a little better. It is like the symptoms cycle. It is like your body tries to drive you nuts! This is just the way I have decided to deal with it, because it is so time consuming to go to drs and they do not know a thing. I have also decided that if I am going to go to a specialist that it is going to ahve to be POTS knowledgeable. Otherwise, it is a waste, to me. My cardio said there were 4 neuros that were familiar with POTS that he knows, and if I need to go to one, it will be one of them. If I have a bad day, I just try to go back to the basics-fluids, exercise, salt, and remeber the things that have helped and make sure I am doing them. It is a lot to go to school. Physically and mentally. As for the incompletes, I just try to remember people have no idea as to what we go through, really no one does, except us. That is just the way people are. I hope things get better, and just remember you are doing a lot. It is a lot to manage your health and school. Jennifer TX

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hey i just saw this after i posted the bday one,

i have to make it out of bed and eat something...sooooo...this will have to be short.

i just wanted to say 'i hear you.' i've been doing a LOT of crying lately too and wondering the same things...will it get better? why is no one paying attentiong? why can't my body follow my mind...it's hard to hold on to the hope when things keep getting worse. i'm scared too. that's all i can say...is that you are not alone when you are scared and despairing and crying.

oh, and when you find out where they sell new bodies, will you set me up with one??????? thanks!

em

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Hi,

I am sorry that you are having so many issues.

I remember when I was doing my Bachelor of Psychology I had to quit 3 classes because I was just too sick. It took me a few weeks to make the decision. After I quit I was still upset because I was going to graduate one year later.

Last week, after a test (where they triggered a syncope) at the hospital my specialist asked me: "What are we going to do with you?" I told him: "Can I swap body!" We both laughed. I wished it would be possible to have a healthy body.

Hope your situation settles down.

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Guest Julia59

Melissa,

I hope the pins and needles is temporary---and is just part of this wacky disorder----and it's not part of the neuropathy getting worse. I'm sorry this past year has been so rough----I wish things would just go right for you.

That woman had no business giving her unwelcome input on the incomplete-----she needs to live in your shoes for one day-----------UUUGGGGGGGGGGGG----yet another ignorant nimrod............ :(

Sorry about the scholarship fund--------------------NOT FAIR. My hubby owes a lot too---about 39K----I think we have paid about 11K back so far. He only needed a 3.5 to reach honors status---when completing his bachelors degree---but got a 3.48------------POOOOOOOO. He was studying for his exams when I was in surgery---and recovering from the surgery---he was sooooo stressed---it was in the summer and they already let him graduate with the class that year, but he had to wait for the final grades as he was finishing his summer class. He got an A---but it didn't help the GPA. He was under a lot of stress working full time---and taking care of me previous to that. I sometimes feel the one to blame on that one. He would have earned scholarship funding towards his masters.

I hope Dr. Grubb can help you get through this---and hopefully the next med trial won't be so difficult----and the stuff will actually make you FEEL BETTER this time. Don't you just hate it---ICK----- You know what actually helped me once----It's when I had large doses of steroids pumped into me when I had the cervical spine surgery. Made my heart pump like crazy at first---but boy did I feel pretty good for a couple months after that----and felt fairly good for about a year----went back to school---looked for a job---ect. I know that isn't reality to for us though---it was only used to keep the swelling down in my spinal cord. I know the florinef is a mild form of steroid----and I often wonder if I should try a smidge of that to help with OI.

Your ANS is taking a beating----and someone needs to find what is doing this to you.

This weather doesn't help----way too cold---way too soon------GLOOMY. As soon as the sun comes out---go put your face in it---drink it up. Sit against a brick building that has warmed from the sun and soak it up. It works to cheer my mood in the gloomy weather. It's usually better if it warms up a bit---even 35 degrees is good.

Maybe they have Autonomic nervous systems on sale somewhere for the holiday season--------- :)

Sending HUGS and prayers your way-----------I wish I could be of more help.

Julie :0)

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The pins and needles is probally something I have to look forward to but as of now I don't experience them.

I just wanted to say I wish you were feeling better. I give you sooooo much credit for doing the college thing and when I see that your having a hard time or your getting negative comments re: dropping a course I get furious.

You should wear a shirt that says " GIVE ME A BREAK.....I'M DOING 110% MORE THAN MY BODY IS CAPABLE OF"!!!!!!

I hope things start looking up soon, you deserve it.

Dayna

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thanks all...for allowing me my vent-of-the-month (don't keep track though...i may need an extra here or there!) and for chiming in with your experiences as well. while i've had the pins & needles/shocks for years it's the dramatic in their pervasiveness, location, severity, duration, etc. that's the big change for me. and while it's not much better than when i posted before i'm almost getting a bit more used to it?? fairly pathetic but true. it's so odd though...almost like i can't feel my legs under me in the same way as normal. very strange. the tingling seems to be the worst from when i wake up in the morning until mid-day and then improves some to worsen again in the later evening. essentially i have about 4-5 hours of feeling somewhat better. not good but better. similar to my norm for how long i can sit up in a given day comfortably but with the added pins & needles issue added in. but anyhoo....

dayna i love your t-shirt idea...but maybe 200% more? i think i'm going beyond 110% at the moment and don't think i'm the only one :) maybe we should get them made for all of us!

and yep, the whole incomplete comment made to me is/was totally inappropriate. something i know intellectually but emotionally don't always follow suit as type-A me still struggles with my limitations.

nina that's great to hear about your prof who so encouraged it; seems like he was actually interested in you learning....a nice breath of fresh air. i did give her a bit of a piece of my mind...unfortunately she saw my tears starting as i wheeled away afterward which probably diminished the impact of my words, but ah well. and the dean actually saw and apologized to me for her which was at least a nice effort.

and thanks for the scholarship debt commiserations. the whole army mess is SUCH a complicated thing for me and encompasses so much old junk for me - health & otherwise - so that it's about much more than the money. not that the money isn't enough. it is, but i think if it were "just" the money it wouldn't be as hard for me emotionally. but i agree that i regardless i really can't think about it or i'd completely go nuts. i've known for ages that the decision could come in the mail & whenever someone asked me i told them i really couldn't think about it b/c i just couldn't. even though it has now come and will have to be dealt with i also need to listen to myself. i think it's tougher b/c of my current lack of ability to be productive in a monetary fashion, i.e. while i'm fighting through a few classes there's no way i could be making any money, so how is it that i am both accumulating more loans and then will have all the army debt which is A LOT less accomodating than standard student loans.

julie, my roommate at vanderbilt said that steriods actually helped her too when she had crashes. i am actually on low doses now b/c of cortisol deficiency but have never really explored it further...interesting though. b/c of my UC though i've come across lots of steroid info and long-term they're nasty so the problem would be that if my crashes aren't short, then what??? always a quandry...

em, i know you're right here with me. thanks girl:-)

i finished up another paper yesterday so only have one more to go. it's about half written so about fifteen pages to go. slowly but surely. the goal is thursday b/c then i will be incompleteless...BUT if the incomplete must happen then so be it. obviously NOT the end of the world (duh). it'd just be great to have it finished.

i get my second B12 shot thursday and weekly for the next month, then monthly. good news is i figured out how to get them at home (my parents) around christmas so that i don't have to schedule my toledo/cleveland time solely around shots on the 22nd & 29th. a bright spot in the midst of a lot of craziness.

on the other hand my procrit efforts were essentially squelched today. i had an appt with an AWESOME doctor but in the process found out that pretty much no one at cleveland clinic will give me the shots b/c of a problem/audit of sorts a while back with someone who was receiving them for autonomic reasons. and dr. grubb wasn't aware of this issue so actually mentioned the involved docs in his correspondence, thinking it would help when it fact it did the opposite. ggggggrrrrrrrrrr. another dead end. i'm not throwing in the towel on it yet but am just super frustrated. but the doc i saw was incredibly nice. unfortunately his specialty has nothing to do with anything that is going on with my wacky body (my PCP thought he'd be helpful in the procrit shots but he then found out about the clinic blockade on them after a few calls) but he was definitely intrigued. and....found the results of my sleep study a month back which my neuro, despite multiple calls to him on my part, had yet to fill me in on. so i figured it must have been uneventful. not so. but i'll save that for another post.

and about the new bodies. ernie that's funny that we've both been of the same mindset there. i'll let you know if i find any for sale. and you too em. and everyone else for that matter. in fact, it will be my treat, k?? new bodies for all!

okey dokey. ramblings done for now. another sleep study post to come but it'll be short. uh...yeah.

thanks buds,

:) melissa

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um, you may not want to treat us to new bodies and add more to your debt? just a thought? a lame attempt at humor.

well, my POTS doc tells me i'm gonna win the lottery...so, when i win, i'll pay????

thanks for the update on everything. you have so much on your plate right now. i'm sorry things are so rough with trying to line up the treatment you NEED. what is up with that?????

do you ever wonder...if we had made it in medicine would we have been like this? would we have forgotten compassion along the way somewhere? now, looking back, i think of all the pre-med folks at davidson who thought they were all that and a bag of chips plus tax and i just can't imagine going to them as a doc with their egos. sorry. but, it's the truth. i've found some gems...my pots doc and the lyme doc i saw and the the geneticist i saw. but, they shouldn't be so few and far between.

the army thing is awful. i wish i knew what to say.

well, i wish i knew what to say overall. i wish i was harry potter and hermione and could wave a magic wand for all of us. and poof, new bodies.

the incomplete thing is ridiculous. i only took two grad classes and the profs bent over backwards for me. it's maddening seeing that they were supposed to have a good disability support system and you are in social work for goodness sakes.

okay, sorry....i got off topic a bit.

hugs...and at least cats can't bark...b/c asher would bark all night long at a cpap machine! he certainly did not like the iv machine i had after surgery!

love, em

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I have started having the sensation of pins and needles lately, I thought that it was due to my back surgery, but he only messed with the right side. So I dont know any more. They are not bad, but just annoying so far. When you find that store for new bodies, let me know I could use one too :) Hope you start to feel better. Vanessa

so i've been having some not so good new symptoms the past few days. since monday morning non-stop. before that it had happened a few times over the past few months but only for a few hours at a time. now it's not going away. i have pins & needles/tingling/electrical "shocks" of sorts in most all of my body. everywhere but my trunk and my head. i wouldn't call it pain but it is SO uncomfortable. and i'm definitely weaker than my norm....usually my strength is okey dokey. i've had pins & needles & some numbness for a long time now in hands/fingers/toes/feet/calves but never non-stop or to this degree. and my vision is a bit blurry too. something i was pinning on the adderall that i tried recently with no luck but have since stopped with plenty of time for it to be out of my system (but yea, i can eat again :) )

and yes i've talked to the docs. several of them. my primary wants me to see the neuro who is being a ______ (fill in the blank, made worse by the fact that i originally really liked him). he's now ignoring both me and dr. grubb's letters & phone calls. we did try fluids and it did nothing for me (though at least i have a good outpatient set-up to get them now which doesn't include the ER). dr. grubb thinks my neuropathy may be progressing and bringing on the new symptoms. i was hoping they could be b/c of low B12 which we've recently discovered but no one thinks so. i'm hoping the B12 shots i started will help SOMETHING but i'm definitely frustrated (can you tell?) and the fact that my B12 is so low and my potassium levels keep dropping and other blood levels are semi-low has us wondering about additional GI issues again....possibly celiac.

i've had other wacky bloodwork as of late too...high Anion Gap, low CO2, low BUN, some other random things i'm forgetting. i've looked it all up and know that it can all mean lots of things or not much at all since i've never had issues with any of it previously (except for the potassium) the general consensus is that my body isn't too happy in general.

dr.g wants to try some new meds for the pins&needles/tingling but we both realize they could make me worse rather than better, especially since my last few med tries have been more than a bit challenging. so he wants me to try to get through the semester first, aka finish up my two papers, which i want to do too but it is SO hard right now as i have a hard time typing or focusing on the computer for any amount of time. this is taking me much more effort to write than my norm as my fingers keep slipping onto the wrong keys.

i made it to my last class today and could hardly keep my eyes open in class & was visibly shakey & could hardly get my wheelchair in & out of my car, something i've never had problems with. it was my first time out of my apartment all week other than the IV trip. i may have to take an incomplete in one class b/c the prof isn't sure she can grade my paper on time since it wasn't turned in this week; when i picked up the incomplete form today a support services lady had the audacity to tell me that taking incompletes is a bad thing that only gets people into trouble. as if i WANT to be taking one! and what business is it of hers anyway?? i'm sure some people abuse them, but come on.....i'm fighting SO hard to be doing the school thing at all and if i have one incomplete that will be taken care of long before next semester starts & largely b/c of the technicality of my prof not getting papers graded fast enough (by her own admission) then i don't need a lecture on it.

ggggggggrrrrrrrrrrr. ggggggggggggrrrrrrrrrrrrrrr. gggggggggggggggggrrrrrrrrrrrrrrrrrr.

and to top it off i found out today that i have to pay the $50,000+ back to the army from my college scholarship obligation that i obviously couldn't/can't fulfill. there's A LOT more to that mess than the money that i won't go into; by no means did i do everything right in the midst of things years back but i really did NOT need to get that notice in the mail today.

as much as i'm generally a positive person my body's downslides are not following my mind's determined lead. i'm not having ups and downs and haven't for over a year now...the ups are all but missing. the whole "it can only get better from here" attitude isn't working b/c more times of late when i think things can only get better the opposite has been happening. primarily physically but otherwise as well. and it's getting SOOOOOOOO old.

ok. sorry for the lengthy vent.

anyone else have such major issues with pins & needles/tingling/shocks body-wide?

a very very tired me...

B) melissa

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