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281019 tn?1235009097

Not dxed with anything at his point.

I do not any dx of any kind. Doc's have flirted with Lupus & MS. I want to know if what I got going on is peripheral neuronpathy(PN) or something else neuro. Hope someone can help. I've been around here now & again. I go see the rheumy Thurs. to get my Lupus test results & have some xrays done. At this point I'm concerned about PN. Start at the beginning:
I thought my neuro problems might have been caused by my vitamin defs (from severe IBS) so I brought it up to the GI. He mentioned neuropathy & MS & sent me to a neuro May 07'. This was way before my leg pain. Most of my neuro problems at the time were in my face. She said she thought it was MS & I was sent for a MRI. When it came back ok, she did a nerve conduction study. That was so painful!!! That test was ok too. I don't know why she even did it. The only nerve problems I had/have are in my left hip because of the birth defect. After all this, she tells me it's arthritis. I already knew this.
This is when it hits me! My skin really hurts today & has been for about a week now. Now my clothes touching my skin hurts. It usually feels like a sunburn. Lately it feels like my skin is bruised. Just my upper thighs & upper arms. It's hurts for my dachshunds to walk on me but once they stay still, I'm fine, kinda. Feel alot like the pain I get in my face that I call "slapped face." Starts with eye pain, left or right. My vision in that eye gets wavy vertical lines in it. Hurts to move my eye or blink. Keeping them closed is the only option, if possible. I get a massive migraine & feel like I am going to die. Then my face hurts on the side that my eye hurts. It only covers a quarter or so of my face. Cold is like ice. Heat is like fire. Like I have been slapped & the sensation stayed. This feeling lasts for a few days even though the eye pain only last 12 or so hours with the migraine. This feeling has moved down to my shoulder & lower back. This used to happen every 3-6 months. Although my face hasn't done this in a while, my legs & arms feel this often. I had some kind of virus in July I guess. The skin on my ear & neck really hurt like like "slapped face." What is this? It's not in my head! Sound like PN to anyone?
I've got bad pain in my legs. I've tried every pain killer. Nothing helps. It started mid-November 07'. The 1st experience was like electrical shocks in my left leg. It didn't matter if I rested or got up & moved around. The shocks even went to my thigh that 1st day. The pain has never gone away. It is worse sometimes then others. It doesn't matter how active or how lazy I am. My left femur head is flat & I have alot of nerve problems in that leg. I thought this was part of that. Then my right leg started doing the same thing. I tired to describe it as shin splints but in the muscles. Like my ligaments hurt. Nothing really takes away the pain.
1st fired rheumy said I just wasn't active enough & that's why I had so much pain in my legs. Mind you this was after I told her that I had to drop down to 3 days a week on my feet at work instead of 6 days. She also said my right shoulder pain was from endo, lol. Didn't know my shoulder could have a period when I'm not even having one. The FNP put me on Requip which didn't help & gave me terrible nightmares. It also kept me up all night so I had to take Trazadone, asleep aid. Then she put me on Neuronitin which did help some but I kept having to up the dose which wasn't a good option. Lately I've been getting those electrical shocks in my right shoulder.
Don't know where to go from here. I was in a wreck 9/26/08 & I have been much worse ever since. If I miss a dose of Ultram ER 200mg, I can not get out of the bed the next day. Also parts of the bottom of my feet go numb then tingle like they've been asleep. Small areas like the size of a quarter. For no reason at all as far as curculation goes. Also the 3 middle toes on both of my feet will go numb. The ortho said it might be Morton's Neuromas. He didn't perform any tests for this. He kinda just guessed that this is what it was. I just saw a book online about Peripheral Neuropathy & it's titled "Numb toes & dealing with Peripheral Neuropathy." I think I got that title right. This is what sparked my memory of these sensations I also get. Have a blessed & wonderful week!
Jen
P.S: And oh, a weird thing happened. I'm used to weird things but this was really weird. I got out of my Suburban & walked to the back. Then I just started peeing! I could stop the flow but as soon as I let go, I started peeing again! I didn't even have to go! I have a fallen bladder & have to go all the time. But this time, no, I didn't even have the sensation or feeling of fullness. Crazy! I'm only 31! Too soon to wear supports!!! Guess I'd rather lose my pee instead of poo, lol.
11 Responses
230948 tn?1235847929
I too am undx for MS though am being retested due to ongoing on sensations just like yours minus the peeing incident lol

I too am on requip and have the worst dreams ever they scare the **** out of me like my own nightmare ever time i sleep and sometimes i wake thinking its real!!  i am thinking of coming off requip as it has not helped at all, how much were you on? i am on 1 mg at night but also fentanal pain patches change every 72 hrs.

I have bad ibs too and alot of food intolarance but am dx with fibro which fits the ibs and many woman have irratable bladders too and period problems,spasms,neck,shoulder,hip pain but i have alot of other sx that dont fit vertigo, eye pain vision problems balance issues, head to toe spasms.

if it was PN then the nerve test would of picked it up i think with MS it comes up normal not sure on that but with other neuro based issues a nerve test would of shown it to be PN but depends when you were tested mine were all 2 years ago so i am retesting as it was all norm but i still suffer so wont to retest.circulation probs are typical in fibro and MS and sleep problems are the main sx of fibromyalgia as we never get into stage 4 sleep so are bodys never restore there selves.

what else have you been tested for?

hope you get answers soon.

Avatar universal
I have waited 20 years for a dx.  I have been told I was having anxiety attacks, etc.  Symptoms kept occuring and I knew something was wrong.  I changed pcp's about 4 years ago and in my first visit she suspected MS.  With her assistance and my anoying persistance, we finally found a Neuro who dx'd me w/MS.  He said I have rare form of MS and that I'd have to go out of state.  Insurance wouldn't allow me to go out of state until another local Neuro saw me.  He agreed to see me, ordered a MRI of the spine and Urodynamics.  The MRI showed a lesion on the spine.  The Urodynamics results showed that I was unable to hold urine but I don't know the name of the condition.  I just know it is consistent w/someone w/MS.  I had already had brain MRI that showed 1 lesion on temporal lobe so at that point, I received my dx.  

I can't begin to tell you how horribly frustrating, discouraging, and angering this ordeal has been.  All I can tell you is that when your body is having problems, you must keep on until you find a Dr. who can find out what's wrong.  It is not normal to have the problems you are having.  I wouldn't dare tell you that you have MS because it could certainly be other things.  You just need to find someone who will listen and do as many tests as possible.

Have you considered Scott & White in Temple Texas?  You can see an Internal Medicine Physician and then that Dr. can set you up w/a group of Dr.'s from different specialties who can work together to see what is wrong with you.  I was trying to go there but was told I would have to go somewhere else due to insurance.

I'm sorry you are having to go through this.  Good luck to you.  I'll pray you find the help you need.
230948 tn?1235847929
oh forgot to mention the skin thing i've had bouts of that when even clothes hurt or someone to touch me like a burn some people have this in fibro and some in MS but its not nice.

Do you get the typical rash over your face i've heard that is to do with lupus they ruled that out in me as i did not have a raise ana i think they call it.

sam
281019 tn?1235009097
Thanks so much for replying!
The nerve conduction was done when I wasn't even having nerve problems with my legs. Only with my face. I canceled it & when I when I went in to get my MRI results, they made me do it. I told her my leg went to sleep at odd times. I guess this is why she did it. I could have done with out the pain, I'll tell you that. I was on the max dose of Requip when I stopped taking it. That was about this time last year. I couldn't handle taking something that didn't help & was giving me nightmares. One night I dreamed I had a stroke & the next day I ended up in the ER. Doc said my heart was fine other than the MVR & wanted to know when I saw a neuro last. I asked why & he said he thought I was having a neuro misfire. That my brain was sending a misfire to my heart making it go crazy. I couldn't breath & felt like my heart was beating out of my chest. My normal 120/70 BP went to 103/60 & has been that low since. That was 3/14/08. I still have yet to see a neuro. I feel like I get no where. My PCP asked if I wanted to see a neuro after my wreck. No one would see me. Everyone's reply was, "we don't see MVA patients!"
I've been tested for Lyme I think. The upid ELISA probably. I've had all kinds of rashes. Itchy ones, ones that don't itch. Red ones, pink ones, purple ones. I get one on my face that is not as sever as a lupus rash. I have alot of kidney problems. I passed a stone in May & now I have bladder infections & kidney pain every few months or so. I also have a cold sweat problem. My PCP tested my thyroid & it came back ok so that search ended there. I was up half the night sweating & trying to get comfortable.
One thing to mention is that after my wreck on 9/26/08, my cousin's hubby(my 1st love) was killed in a wreck 11/8/08 then 12 days later his parents were killed in a wreck 11/20/08 then 2 days later my mom's fiance of  9 years went to the hospital with heart failure & passed 12/9/08. I was so scared to drive. I've been off work ever since the wreck. I had 2 jobs, 1 at my mom's deli & diner as a cook & waitress & 1 at Kroger as a cashier. My doc has not released me yet. I don't know if tomorrows rheumy results will matter. I've got to go back sometime. I am just so scared. I am always in pain but when the bad pain hits, I can't even get out of the bed. When I do to take a shower to get relief, I can't stand to wash myself. When I finally get up, I can't even dress myself & have to lay back down & sleep for 2 more hours naked, until I have enough energy to dress myself. Then I barely make it to the couch to sit there the remaining hours of the day.
I gave up looking for answers until the wreck. I am so much worse now. The pain I had before didn't even touch this pain. I can on imagine it getting worse until I can't ever get out of bed. I try to keep my head up but it is so hard. Thank you guys again for the advice & kind words. Take care!
Jen
Avatar universal
JEn - I am not diagnosed either, but have pain issues similar to yours.......my docs are also thinking about lupus..........I don't know what to think.  Have you had the lupus bloodwork done???????? What were your results????   I know I am in 'survival' mode right now.........and very depressed.

Mocha
281019 tn?1235009097
I just got back from the rheumy & my ANA was negative. Now he's testing me for RA. Just another dr. app. More money spent. No further with a dx. Starting to go into that, "I don't give a **** what's wrong, just take care of the pain" syndrome. Taking care of the pain is just a band-aid as far as I am concerned. I want a fix. But I get to where I just don't care. I go back on 3/21 to get the RA results. I was supposed to have xrays done today but I didn't push it. I didn't feel like it anyhow. Hope everyone's having a great week!
Jen
230948 tn?1235847929
Hi

i so feel for you hun with all the rashes ad pain i would of said lupus, but you still can have lupus without a ANA i think, i get the cold sweats at night and during the day i get soaked at night and if i do move during the day which is hard work at mo i get covered in sweat so embarrasing and anoyning and uncomfortable as i get hot inside although i am cold to the touch i used to be always cold before i fell ill now i am alwyas hot and over heat easily, i've been tested for tyroid to and it was negative.

I am looking into lymes as not been tested for that as my dr think it is unlikely in the UK but i have been to france,spain and america but dont recall being bittian.

you must keep pushing no matter you cant suffer like this give your selve some time like i did ( maybe not 2 years like me though) and then look at it again you might have RA or one of the thousand of neuro disorders out there and like me just need to search for a neuro who is willing to test untill he finds what is wrong.

we all here with you hun. look up some of the lupus rashes and see if they match and read some of the stories and see if there sx match just because no ANA i'm sure that it does not mean you might not have it but also RA can effect your organs like kidneys and sjgons sydrome spelt it wrong but brain tired it cause dry eyes and skin problems.

keep in touch

sam
763858 tn?1234815337
Hello 1cross.  I 'm just writing to let you know that you are certianly not alone!!  I've been having some of your same symptoms.  I've had some for decades, and other are new.  I've had Fibromyalgia for years...can even trace some of it's symptoms back to my teenage years...mostly the leg pain.  I had the 'aching' symptoms then, which grew worse over time.  In the spring of 2007, I had an attack of MS-type symptoms which literally "rocked my world!"  They lingered for about 6 months, then calmed down after a dose of steroids prescribed by my Pain Specialists (for the Fibro).  He referred me on to my 3rd neuro...as my first neuro (referred by a PCP), referred me on the OU Neurology Dpt.  

My first set of MRI's was done on an "open unit" (which I'm fixing to start a new topic on), which is simply a "big magnetic ring" that you pass through for exam.  A "closed unit" is the kind of machine that is totally enclosed...like a big tube.  These have a much stronger magnetic fleild and yield better images;  whereas, the "open units" can supposedly "miss" alot of neurological findings, as it's just not powerful enough to record them.   As I said, my MRI's were done on an "open unit" machine.  They were negative/clear, with only a "suspcicious spot" on my C-spine.   So, all 3 neuro's ruled out MS.  My first neuro, had also given me an EEG, EMG, & Visual Field Test.  All were fine.  So, they had no "positive" tests to go off of.  

I’ve had 2 positive ANA tests done.  The first one was 1:160 and the second one was 1:640…both were speckled pattern.   I’ve been suspected of Lupus too, but was told I didn’t have it by a previous Rheumatologist.  However, my last neuro, ENT, & Pain Specialists ALL thought it was Lupus, so, I had a new referral to a new Rheumatologists;  however, we had to suddenly move to Montana.  I see a new one here next Thursday.  I’ll be sure and post back her conclusion or actions.  

I tested positive for a previous Epstein Barr Virus infection.  I’ve read several articles mentioning a correlation to EPV & MS.  I’ve tested negative for Lyme disease, Sjogren’s, thyroid disease, & several others that I can not even remember.  

I've continued to have MS-type symptoms since there, with 4 specific episodes where I had an onslaught of symtpoms (flare-up or exacerbation?) ...and am in that 4th one now.  My new symptoms are...left-eye blurriness with strange sensation of being 'swollen' (but is not) and feels like my left eye is drooping, but it's not.  I'm also having numbness sensations in my chin (off-&-on) with tingling in my frontal face, nose, and teeth).  I continue to have the "burning sensations" in my face, which I've been having for 2 years now.  Here is a list of my typical symptoms over the past 2 years, although several, I've had for numerous 20+ years.  

* numbness in various places...esp. the face, hands/arms & legs/feet
* tingling or pins-&-needles in various places...esp. the face, hands/arms & legs/feet
* odd buzzing & vibrating sensations in various places
* burning sensations in various places
* off-balance issues: where it either feels like i'm moving (and I'm not)...or like I'm
     constantly "falling to the right";  constantly 'tripping over nothing' & knocking things
     over or dropping them, bumping into walls, running into people, etc..
* severe cognitive issues including, but not limited to, memory, word-recall,
     loosing "complete thoughts" as in, my whole brain just "shuts down" (like a
     computer 'freeze' or 'crash');  attention to detail;   concentration when I'm reading
     (keep having to read the same line over & over until it 'sinks in');  fearful episodes  
     where I'm either doing something & I 'all of a sudden' forget how to do it (sequence)    
     or I'm driving somewhere & 'all of a sudden' I forget where it is I'm driving too...or why
     I'm in a turn lane?;  
* speech/language problems:  sometimes it's as though my words come out all 'jumbled'
     (letters are backwards or just out of order) & others where my words come out
     backwards;  times when I'm speaking and my thoughts just vanish (computer crash),
     or I'm trying to listen to someone and my mind goes blank...can't hear the rest of the
     sentence/conversation (ADD...Attention Deficit Disorder);  difficulty with recalling
     words, how to spell them, or type them and others as though my articulators (mouth,
     tongue, jaw) don't want to cooperate
* aicd reflux problems and gastrointestinal problems that come-&-go
* bladder problems that come & go...incontinence, urgency, inability to void (all come-&-
     go at various times);  recurrent bladder infections
* swallowing problems
* sudden jolts of 'electric-like' shocks that feels like a hit from a tazer gun, in various
     places of my body, but most prominent in my legs and arms
* over-all aching with feeling of having the flu
* sensations of someone 'sticking me with a pin' or a 'bug biting me' in various places
* odd sensations of 'bugs crawling on me' or 'my hair standing up'
* eye problems:  off-&-on eye blurriness...with my glasses on, eye pain, see floaters
     and strange movements in my peripheral vision (eyes playing tricks on me)
* anxiety attacks
* sudden feelings of extreme emotion
* TMJ/a lot of sharp ear pain, sometimes have 'ringing' in my ears, or hear things
     that 'strange sounds' that aren't there (i.e. someone talking, phone ringing)
* head and right hand tremors;  although, sometimes I get the 'whole-body' shakes
* severe spasticity, especially in legs and feet, hands, & neck/shoulders;  charlie-horse-
     type spasms in legs, feet, neck, and sometimes arms
* severe migraines
* muscle weaknesses esecially in ankles, legs, hands, wrists, arms
* poor immune system
* edems/swelling of hands and feet, particularly around the joints (ankles, toe and finger
     joints)
* severe allergies, recurrent sinus infections

~tj


763858 tn?1234815337
Oh,  and I forgot one of my worse symptoms....FATIGUE!!!...& did I mention PAIN!!
Btw...I love your username!  ;)
~tj
281019 tn?1235009097
I know alot of those symptoms well. The swollen feeling is awful. I feel like that. Like my whole body is swollen. I know my hands & feet are but it feels like my face & arms & everything. Right now my legs are killing me with electric jolts. Someone on another forum said the Ultram ER wouldn't help with nerve pain but I am out of the ER. Now I'm on Ultram quick release. I was able to get out of the bed this morning so that's a plus. If I had to put money on it, I would bet that I have Lyme. You can have Lupus without a positive ANA. It's just not too likely from what I've been told. I gotta go get stuff done. It's already after 11am my time. Take care!
Jen
281019 tn?1235009097
Hi everyone! I am going to CNS Healthcare (www.cnshealthcare.com) to be a test subject. I figure what will it hurt. No doctors in 3 years have figured out what is wrong with me.
I don't think I mentioned before because I don't know if it was a lyme rash but, I had one that looked a heck of a lot like one April 07'. I thought it was a ring worm because it was round. It didn't itch though & my son had a ring worm a really long time ago & he scratched it to death. I asked the pharmasist see what he thought it was & he said it wasn't a ring worm but didn't know what it was. This was before I knew anything about lyme. It was after this that I got 3 more weird rashes & when the unexplained joint pain began. This one stayed about a month. I also got an extreamly itchy purple rash at the same time that lasted a month.
I guess I won't be back here until someone brings up MS again. I will miss you guys & I will check in from time to time. I'll definatly let you know how the CNS thing goes.
Jen
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