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Old 03-16-2007, 05:29 AM   #1
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Question Have Lupus & having various new & increased existing problems

Hello. Sorry for the lenghty post, but with so many things wrong, I must mention them all for anyone to get a full picture. lol
I am a 40 year old female who has Lupus-SLE, and...Fibro, OA, APS, Meralgia Paresthecia, Hypertension, Raynauds, Sjogrens, Corneal Erosion Syndrome and various other problems/syndromes/etc.

I am what's known as 'Negative ANA Lupus' meaning I have never tested ANA pos for Lupus...BUT a DX was given finally, based on meeting the 'criteria' and the fact of testing APS Pos.-its a pretty common thing to test ANA neg, for those with postive APS and Lupus symptoms.

I am currently seeing an ENT due to having ear/hearing-tinnitus/balance problems for the past 3 weeks. Went yesterday for the first visit-hearing checks out normal, ears are clear of any signs of infection, fluid, etc-now schedualed for an ENG and some other test on 04-10-07. During exam, doc made me do the 'closed eyes/open eyes' walk a straight line and the marching in place as well. During all-esp. when eyes were closed, I felt like I was falling to the left side-doc noted this as well, as it was apparant to her, and she asked me which way I 'felt' like I was falling-and it was always mostly to the left.
I have suffered dizziness for a long time, but never this bad-previously tested for Meniere's about 4 years ago-was negative for it-ruled out via several ear/balance tests.
Also, about 4-5 years ago, my neuro I was seeing then(have since moved too far) I was given an MRI to check for MS lesions, due to symptoms I was having back then-no lesions found, but doc said they could 'show up at a later time' and mentioned its not all that uncommon for a person with SLE to also have MS-have since found that to be true via knowing other 'Lupies'.
To shorten this, I will post a list of current and ongoing symptoms:

Weakness

Unsteadiness-feel like I'm going to fall over-always grabbing onto things.

Much more fatigued lately-Recent Lupus blood workups show no activity at this time. No energy.

Pressure in head/right ear

Dizziness/unsteadiness

Noises in right ear-left as well, but much more evident in right ear-varies from high-pitched tones, buzzing, humming.

Numbness of facial area-right side-temple area-comes and goes.

Hearing loss R ear-better now, but very apparant last week-again, no signs of ear infection or visable inner-ear problems to the ENT.


Symptoms I've had for awhile now that 'could' possibly be related:

Clicking in LEFT ear-been seen by a few ENTs for this-none know what it is-its basically, like a 'beat' to every syllable I speak! Comes and goes, for several years now. The only way to describe it, is to tell someone to put their palm over their ear, then tap with one finger on the back of that hand...THAT'S what I hear in my ear!!!
Its maddening when its really active! I've been tested for many things by ENTs because of this-its a mystery to them. lol

Can't handle loud noises or too much background noise.

Cognitive functions are worsening-garble my words, cna't get words out, can't think of, or remember words, short-term memory getting worse-I know its a symptom of Lupus, but as I said-no current Lupus activity.

Tingling sensations in arms, legs, hands, feet.

AND a WEIRD one-when I sneeze, my arms tingle from my shoulders to my fingertips!!! Been happening for a couple years now.

Another weird one...lol...hard to explain, but basically, lets say I have an itch on my abdomen area...I scratch it...and feel strange tingling sensations down my legs!! Usually the leg on the side I scratch, but sometimes both.

Legs feel 'tired' heavy. Again, a weird one here...but sometimes, when lying in bed, its like I have no idea 'WHERE' a certain body part is at the time!! Itakes me a moment to think about it, figure it out, feel where it is...etc...like my arm for example...I'll be lying there and all of a sudden think..."Is my arm across my abdomen...or not?!" And I have to check to know for sure!!!!


Eyes: Having lots of 'floaters' lately-more than my usual, and double vision at times.
Flashing lights if I move my head too fast or even when eyes are closed and I move my head.
Have one pupil that for years, is larger than the other almost all the time.

LOTS of muscle spasms and twitching all over body-much more often than usual!

Sudden shock-like pains in head, limbs, etc-out of the blue, they just hit and then are gone, most annoying ones are in head and behind ears. Sometimes happens just from turning my head...but those feel a bit different. Not quite like sudden shocks, but duller electrical sensations.

Mentioned the nerve damage in right thigh earlier-old neuro said after tests, that its MP.

Have to wear wrist braces at night because hands/arms go very tingly, numb-to a painful point-was tested by same neuro for Carpal Tunnel-it was negative. Right hand/arm worse than left, but left is starting up again now.

Weak bladder-can leak upon coughing, sneezing, laughing too hard and cna't hold urine like I use to be able to. Only leaking but enough to always need to wear shields, just in case. happens at least once or twice a day.

Nausea-usually when I am real dizzy, but its also happening more often on its own. NOT pregnant-had tubes tied years ago. lol

Oh just remembered this one too...the Shaking! My hands shake like when holding a book to read, or doing simple tasks, etc.

IBS symptoms/problems.

Severe heatburn problems-GERD has been mentioned.

Lots of pain behind left knee-not in the kneecap area-feels more like muscular pain-been like this for several weeks now-don't think its the OA, because of where it is and type of pain. Should also mention that on this same leg, my calf is markedly bigger than the right one! had doppler and other tests, didn't show anything. I know Cardizem can do that...but it usually affects both legs! Also, for about 4 weeks, a few months back, I had very obvious pitting edema in the same calf and foot! Hense the doppler, which again, was normal findings! Its gone down now, but has come back and gone again now and then. i don't use lots of salt at all and really don't eat salty foods, so cardio doesn't believe its from sodium, because again, it would be both legs affected. Another mystery in my mysterious health saga.

Oh and another one I remembered-this is taking awhile to remember it all and type it! lol Now I forgot it. lol!! Oh yeah, my voice goes hoarse MANY times a week!! Usually, if I've been talking a lot but sometimes, its just hoarse! Was told year ago, by ENT, that its nodules on my vocal choards from the Lupus. (they always say EVERYTHING is from the LUPUS and its maddening! lol)

In regards to the Raynauds symptoms...lately, my hands and feet are even colder than normal-which is usually cold! I get cold everywhere!
Sometimes, its just a quick 'cold feeling' in various parts of my body-out of the blue, some area will just feel cold! Could be a spot on a leg, or abdomen, or anywhere.
Then, on the opposite side...when its too hot, I cannot get comfortable! It goes from one extreme to the other.

Sleeping problems-even when totally exhausted, which is OFTEN, i still can't sleep!! Was put on Lunesta, but OMG, had to stop because of the horrible aftertatse side effect!!! YUK! Then tried Ambien-stopped working after about 3 weeks. have to keep getting up at night-just to get up!!

That's all I can remember now. lol Oh and as far as meds I'm currently on,
here's the list:

Plaquenil 200 mgs 2x a day

Etdolac 500 mgs 2 xs a day

Cardizem 240 mgs 1x a day

Elavil 25 mgs 1x a day

Elavil 50 mgs 1x a day

Xanax 0.25 mgs 2xs a day-for Anxiety/anxiety attacks

Flexeril 10 mgs I only take half 1 x a day(5 mgs) due to 10 mgs knocking me out!

Ultracet for OA pain

Ecotrin-81 mgs 1 x a day for the APS to thin my blood.

Well, so much for shortening this. lol But, its so much to cover to fill people in and with diseases, such as I have, you NEVER KNOW what is from WHAT! lol

I should also mention that I was tested 2-3 years ago for CNS Lupus and the MRI showed no signs of that at all.

Sooooooo...any opinions on all this? Could the neuro 4 years back be right and MS can't be ruled out because lesions didn't show up back then??? I've heard that lots of people with a DX of MS, first see an ENT because of hearing/ear/Tinnitus problems!!! And, what made me post this here is the fact that I read in archives here at this very site, and others, where several people with MS, spoke of a STRANGE CLICKING SOUND IN ONE EAR!!! Which really caught my eye, because of my unknown and odd ear problem in my left ear!!!

I hate having to wait for these other ear tests till April 10'th, but that's when they had an opening till then!! Should I, in the meantime, make an appt. with my neuro too!!??

I appreciate you taking the time to read all this and would appreciate any input here!

Thanks!
Cathy

Last edited by LupieOne; 03-16-2007 at 05:46 AM. Reason: adding forgotten info

 
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Old 03-16-2007, 05:48 AM   #2
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Kim_blessed HB User
Re: Have Lupus & having various new & increased existing problems

Hi Cathy,

Boy it sounds like you've been struggling for a long time. How crappy! Many of the symptoms you describe sound consistent with MS but I don't know a lot about other Neuro disorders. Sounds like a repeat MRI would be helpful perhaps you could discuss this with your new Neuro.

It is not uncommon for people to wait many years for people to get an MS diagnosis. I hope the tests you are having in April bring more answers for you. How are you coping with all the uncertainty and chronic illness?

 
Old 03-16-2007, 06:01 AM   #3
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LupieOne HB User
Re: Have Lupus & having various new & increased existing problems

Hi Kim,
Thanks for the reply.
Its VERY frustrating, to say the least, to cope with all I have. In total honesty, I have NOT had one single day without pain in over 25 years!
I feel like a walking pharmacy, what with all the meds I must take daily!! lol I've been on more than what I listed as well, but am currently not on Prednisone, thank GOD! lol I hate when Rheumy puts me on that nasty drug! I had also taken Methotrexate and Coumadin, in the past-several years back, RXd by my old rheumy, who at the time said I had MCTD-Mixed Connective Tissue Disease alsong with the pos. APS.
Then, after years of searching for a GOOD Rheumy, I found my current one about 6-7 yeras ago, who is VERY knowledgeable about Lupus, etc...and I call her my God-send!! lol Before I found her, I gave up, telling hubby...'that's it...no more docs-I'm too tired of searching and being tested and re-tested all the time and getting no clear-cut answers!' but he convinced me to try and find one more doc, and well...I found her!! lol
So, as far as waiting many years for DX, I am already a pro at that!! lol
But its still so frustrating to not only have to wait to go back for those tests, but basically...I am so sick and tired of being sick and tired!
Basically, my 4 children, lil grand daughter, and hubby are the reasons I go on. If not for them, I would have given up a long time ago. They are my heart. I also try and keep the faith and know deep down that I suffer all this for a reason, that won't be known to me in life, but one day, He'll have the answer for me.

Thanks again for your reply.
*hugs*
Cathy

 
Old 03-17-2007, 08:20 AM   #4
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LupieOne HB User
Re: Have Lupus & having various new & increased existing problems

Anyone else have ANY input here????
All this is so frustrating and in search for answers/input, most of the things I posted about I have found here in searches of posts by people who have MS and experience the same things!!! Even down to the strange problem I have with my left ear-the 'beating' to every syllable I say-that no doc has been able to figure out!! I've read in MANY posts/replies here where people are talking about ear problems, the tinnitus, etc...and MANY have mentioned an odd 'fluttering' in their ear!!!! Sounds like the same thing I've been having!!! I've just always called it the 'beating echo' in my ear!!! But yes...its exactly like a fluttering in there!!!
Its just unbelievable the amount of things I am reading here and other sites about MS, that are the exact same of my symptoms and problems I am experiencing!!
So if anyone has any insight, I would so appreciate it!!
Thanks!!!
*hugs*
Cathy

 
Old 03-17-2007, 09:15 AM   #5
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Re: Have Lupus & having various new & increased existing problems

there are neurological diseases that attack areas of the brain that are especially active such as the nerves for ears and eyes, and nerves to other sensations. A lot of the symptoms you list are like MS, but many neurological symptoms are like MS. To me, far too many of your symptoms are off the mark. But yes it is true of lesions coming later, because MS is a progressive disease lesions show up later for almost everyone who has it.
Frankly, from the list of the diseases you claim, and the amount of symptoms you have, it just sounds like you are overly sensitive. not every twitch is a symptom. Many are just that, twitches. I would suggest you relax and wait for what you cannot ignore, otherwise you'll drive yourself nuts.

 
Old 03-17-2007, 11:14 AM   #6
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Re: Have Lupus & having various new & increased existing problems

Cathy,
It sounds like most of your symptoms are characteristic of Lupus. It is the disease that best seems to fit your many difficult symptoms.

My sister has Lupus and much of what you describe sounds like what she goes through.

What has made you concerned that MS might explain things for you better?

 
Old 03-17-2007, 03:47 PM   #7
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Re: Have Lupus & having various new & increased existing problems

I too have a sister with MS and her sx are not like my sx with MS.
We both get tired, but she has systemic lupus, bruising on the body, problems with her kidneys...even a stroke. She does not have trouble with balance or her gait unlike myself.
I would leave it up to the professionals...they are the experts and some times it takes years to get a dx of MS.
All the best,
Bonnie

 
Old 03-17-2007, 04:58 PM   #8
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Re: Have Lupus & having various new & increased existing problems

Quote:
Originally Posted by Kim_blessed View Post
Cathy,
It sounds like most of your symptoms are characteristic of Lupus. It is the disease that best seems to fit your many difficult symptoms.

My sister has Lupus and much of what you describe sounds like what she goes through.

What has made you concerned that MS might explain things for you better?

Well, because I am having all these worsening neuro problems and have been tested for CNS Lupus, which was Neg. So its NOT the Lupus causing these types of neuro symptoms-as I said, recent blood workups show my Lupus to be silent right now. The neuro I use to see, is the one who said MS could be in the picture later on-he tested me back then-MRI- and he said it showed no signs of lesions but also said that they could appear at a later time.
That was about 4 years ago. So, I didn't think much about MS anymore until all these symptoms came back, along with the new ones-which all only continue to get worse. I know of quite a few fellow Lupies who have also been DX'd with MS later on, because of the same types of problems, yet also show no clinical signs of CNS Lupus(Central Nervous System Lupus). Lupus and MS are in the same class of diseases...they are 'sister-diseases'. Both are Autoimmune diseases.
Believe me, the last thing I'd want is a DX of MS on top of everything else I have to deal with. What I want are answers! Something is causing all this and if not the Lupus, or my other dang diseases...then what?? These things just don't happen for no reason. I've been through this waiting game before. I know these diseases take years to DX in some. It took me about 10 yrs before getting the official Lupus DX. I just want to feel good for once in my life. I haven't had one single day without pain in over 25 years. I don't even remember what living WITHOUT PAIN is like. It all sux and I'm sick and tired of being sick and tired! With answers...come treatment...with treatment comes relief, even if a little sometimes. But without answers...no treatment...no relief. Just endless suffering in a living hell.
My boss-a longtime family friend, has MS. We've talked about it because he sees my symptoms and problems at work. I've been out of work for over 2 1/2 weeks now BECAUSE of this balance problem, weakness, dizziness, and noises in my ears. Its a very busy auto repair shop and I can't even handle the noises coming from the shop. I've tried to go in to work a few times lately and each time...had to leave after only a couple hours at my boss' insistance. At this rate, I don't think I will be going back to work. I simply can't physically do it anymore because of my health issues to begin with, and now...all this new crap has made it impossible to do.
So in reply to Michael's reply, above yours....the diseases I 'claim to have' are REAL and DX'd! Nor am I overly sensitive to pain and suffering because were that the case, I'd have caved in totally years ago! They are far from 'twitches'. Its agony, each and every day!! I suffer constantly and usually in silence because no one really cares about the problems of others anyways. I simply came in here looking for insight and input, that's all.

Thanks for replying Kim...and you too Bonnie. I'll keep you both..and your sis, Bonnie, in my prayers.
Take care.
*hugs*
Cathy

 
Old 03-17-2007, 05:07 PM   #9
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Re: Have Lupus & having various new & increased existing problems

I didn't think you would be happy with my opinion. But when people have a long list of diseases, no matter where they come from, then writes a longer list of symptoms, I immediately think they are mostly psychosomatic problems, and I still do. You present yourself that way, I can't help that.

 
Old 03-17-2007, 05:30 PM   #10
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Re: Have Lupus & having various new & increased existing problems

Quote:
Originally Posted by michael178 View Post
I didn't think you would be happy with my opinion. But when people have a long list of diseases, no matter where they come from, then writes a longer list of symptoms, I immediately think they are mostly psychosomatic problems, and I still do. You present yourself that way, I can't help that.

I presented what is fact and is DX'd. I also presented what's been going on with me lately and worsening. I also had SVT-SupraVentricular Tachycardia-a severe irregular heatbeat, that required a 6 hour ablation last year, to repair the extra circuit in my heart that was shorting out...was THAT psychosomatic as well?
For someone who posts in many of the forums here, for many various diseases/syndromes, aren't you a bit hypocritical to say someone else with many health issues,
problems sound like they are all psychosomatic problems?? I wouldn't dare ever even think of replying to people the rude way I've seen you do...yet you seem to have a long list of diseases and problems as well. Did I question yours? No, I didn't and wouldn't, because no one knows or understands what each of us go through and deal with, but ourselves. I have been a member of this site since 2004, yet only have 34 posts...you joined this month and have almost 3x's the posts I do. You'd think a person looking for attention who 'claims' to have all these diseases and symptoms, that you call 'psychosomatic', would have MUCH more than 34 posts in over 3 years time. lol
I am not a liar or a hypochondriac...like we Lupies haven't heard THAT before!! lmao "But you look so good!" "You can't be sick! "Its all in your head" "yadda,yadda,yadda"
I'm a Christian woman who abhors liars, especially having known a couple compulsive liars that destroyed families and lives with their lies. I can't tollerate a liar.
Do you think all my specialists would have me on so many drugs, were they not REAL problems and diseases?
If you knew anything about Lupus, you'd know that many of the existing problems I have had for years are VERY COMMON is most Lupies. I don't know of 1 single Lupie who ONLY HAS LUPUS. Most also have Fibro, Hypertension, Sjogrens, Raynauds, OA, APS, etc...etc...etc...I am of the norm of Lupus, as far as that all goes.
Ya know...a little kindness and compassion goes a long way. I'd think with all you have to deal with, you would be a more compassionate person. i haven't let my diseases harden me to common kindness and compassion. So in saying...I'll keep you in my prayers as well, Michael.
Have a good and painfree night.

Cathy

Last edited by LupieOne; 03-17-2007 at 05:37 PM. Reason: typos

 
Old 04-02-2007, 11:16 PM   #11
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Re: Have Lupus & having various new & increased existing problems

Wow. I hear eveyone. I have been told for so long it's in my head... Also, Michael, I know through experience, women are told these things. So, I am sure we do not intend on discrediting your opinion, but you, too discredit our "psychosomatic symptoms". I know as much as any person, half of our personal experiences are subjective.

Michael, you struck a nerve with me. On this forum, I WILL NOT BE TOLD IT IS IN MY HEAD!!!!!!!!!!!!!

I do not WANT A DISEASE!!!! Can you imagine having multiple dibilitaing symptoms that everyone dismisses as in "your head"? Simply because there is no label yet?

 
Old 04-03-2007, 06:25 PM   #12
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Re: Have Lupus & having various new & increased existing problems

Quote:
Originally Posted by apesb View Post
Wow. I hear eveyone. I have been told for so long it's in my head... Also, Michael, I know through experience, women are told these things. So, I am sure we do not intend on discrediting your opinion, but you, too discredit our "psychosomatic symptoms". I know as much as any person, half of our personal experiences are subjective.

Michael, you struck a nerve with me. On this forum, I WILL NOT BE TOLD IT IS IN MY HEAD!!!!!!!!!!!!!

I do not WANT A DISEASE!!!! Can you imagine having multiple dibilitaing symptoms that everyone dismisses as in "your head"? Simply because there is no label yet?

AMEN and THANK YOU, apesb!!! I swear, if I ever hear..."But you look so good!!" one more time in my lifetime, from someone who has no possible idea, what living with so-called, 'invisible diseases' is like, I'll go insane!!! lmao
I always say, that if they tried living in my hell for even one day...they wouldn't last an hour before they crumbled into a heap of a crying mess!! Yet, I remain upright and fighting on daily through my personal war, which my own body has declared upon me! People who are clueless, have absolutly NO IDEA what living with chronic and debilitating and agonizing diseases is like!
For years and years, it is widely known how women recieved less-that-wonderful care in the medical field because the profession believed their symptoms to be 'all in their heads'. Yet NOW, there are actual defining symptom lists of how things appear different in women then they do in men-like heart attacks for one! Besides, if women were merely 'complainers' mankind would have died out long ago, because no man would ever survive going through childbirth!!!
Thanks again for your 'right on' reply!

*hugs*
Cathy

Last edited by LupieOne; 04-03-2007 at 06:26 PM.

 
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