NO LUPUS OR RA SO NOW ...FIBRO/MS/LYME??? HELP

I was referred here by the MS community. My story is long but maybe someone here can give me some insight.

About a year ago I was perfectly healthy.. I was happy, full of energy, on top of everything, and able to suceed at my job and take care of my husband and 2 small kids with no problems.

THEN, my whole life went tumbling downhill with no explanation.

It started with FATIGUE and dizziness. I felt really spacey and " out of it" all the time. I started getting confused and losing track of things at work. My managers noticed and kept asking me if I was ok. I have always been in perfect health so I assumed maybe I had a mental thing going on. My husband noticed problems at home too. I was letting all the house work slip, I would space out.. he would tell me things and I would forget 2 min later.. I could hardly keep up with the kids. I thought maybe it was some sort of depression ( eventho i was happy, LOL) I went to a psychiatrist and he gave me Antidepressants and Ritalin for ADD.

The fatigue and ADD symptoms continued and then came the physical problems...

It started with widespread joint pain all over my body. I was tested for Lyme, RA, and Lupus with a CBC and Antibody test and they were all negetive.
It went away for a couple weeks... then
I then started to develope strange additional symptoms...
I have muscle pain, and WEAKNESS. It is mostly on the left side of my body in my arms and legs. I also have tingling and numbness. My arms and legs will go numb when I sleep, and sometime it feels like a tournequit is tied to my arms thruoghout the day.. its like partially numb.
Then the other day I woke up and my left leg just DIDNT WORK. I got up to walk and fell flat on my face... its like my brain forgot to tell it to "go"  it was strange.
I also have problems with my fingers... when typing at work the fingers dont always go where I tell them. Only in my left hand... it is like  my brain tells the fingers to move but somtimes its like they get "stuck"
I have severe FACIAL PAIN and EAR PAIN. Only on the left side. It feels like someone is stabbing a screwdriver through my ear. The bones in my face hurt under my left eye and cheek and all the teeth on the left side of my mouth hurt.
I also have hot pains in my left arm/shoulder. It feels as if someone is sticking a hot poker into my arm. It happeneds randomly throughout the day.
My legs also get sore and are so weak. I can barely walk up my stairs...
The bottoms of my feet are also very sore especially in the morning . they feel bruised and it hurts to walk.
I can no longer put on makeup or blowdry my hair because my arms get so tired and weak and sore....
I cant stand up in the shower because my legs get sore.. they also get red & swollen if I am in there too long. and they burn???
Also, in the summertime when I walk my dog my legs get severely itchy and red... they itch so bad I could litterally scratch them bloody. It is like the bloodflow in my legs is on fire .....

Could this possibly be Lyme?? I had 2 negetive antibody tests for it and the other docs said that " rules it out" ... I am going to a new doctor and starting all over tomorrow...

My last doctors have " No Clue" ( those are their exact words LOL ) what is wrong with me.

If anyone has had these problems let me know.... I was also thinkin it could be MS... but they said because I had joint pain that rules out MS...

I am so confused.sad.lost... and about to lose my job because i have missed so many days of work. I can't get a doctor to write me a note to excuse me off of work.. because I "HAVE NOT BEEN DIAGNOSED WITH ANYTHING"  and for all they know I could be " making it up". !!.. God, I feel like I almsot need a lawyer to bring with me to a doctor .. like I have to PROVE somting is really wrong. I already know they will never give me any kind of pain medications... cuz without a "real" tangible problem they think i am a drug-addict LIAR. Whatever.... I dont even want pills anymore... ill just suffer...

I just want to know what is wrong and possibly have them FIX IT... or at least excuse me from work for the time being so I can still have health insurance while I am working through this terrible mess. If i get fired and lose my health insurance .. all because these docs dont believe me ( or are stupid i dunno)  I am really gonna lose it... :*(

Also if anyone lives in the Chicago area and knows a good doctor that will help or listen please let me know

:*(

[JackieCalifornia]

Sorry to hear about your situation.

To find a 'Lyme Literate MD', that is, one who takes a more progressive view of diagnosis and treatment, google for example 'LLMD Chicago' or some other geographic identifier.

I just did that, and there are several 'hits' in the first half page that reference Chicago.

Also look at the ILADS [dot] org website.  ILADS is the International Lyme and Associated Diseases Society, which is leading the charge in supporting research and an open mind about Lyme and related diseases.  The website has lots of information in it that might be of interest ...

... but given how you feel, you may not want to do a lot of reading right now.  When you are feeling better, the movie 'Under Our Skin' and the paperback book 'Cure Unknown' by Pamela Weintraub are help just so you know you are not alone.  When I was first ill, however, I was in about the same shape you are now, and I couldn't find my way to the grocery store much less concentrate on a book or movie.  The title of that book, 'Cure Unknown', is unfortunate, because many people are now well.  

The sooner you get treatment, the more likely you will get well and get well sooner.

Let us know how you do and if we can help further.  Oh, and have you tried going on disability at work, instead of leaving the job?  Whether your ailment has a name yet or not, what counts should be whether you can perform or not:  and if you can't perform on evaluation tests of mental acuity, memory, etc., then perhaps you qualify for disability, both any private plans your employer may have and also for state benefits.  I was too stubborn and proud to try for disability, but think now that I should have.  Mostly I just didn't want to believe I was so sick.  Learn from my mistake.

Best wishes to you.

[skarey]

I'm so sorry you are feeling like this.  When I read your post I could totally relate!  I have MANY of your same symptoms and my story is similar to yours.   I too got sick shortly after the birth of my second child and I too worry about MS.  However, I've been told that joint pain, and widespread pain doesn't happen in MS.  I have been exposed to ticks and had bites.  My first test was NEG, my second was neg with a few pos bands, and finally I got tested with Igenex and got a positive.  Keep pursing a diagnosis.. don't give up..  I suggest you get tested by IgeneX or seek the help from a LLMD.

I can relate to the weakness.  I've been having the same issues lately and it's frustrating and scary.  Also i wanted to not that my arms and legs fall asleep VERY easily when I sleep and always wake up numb.  It always goes away though like you said.

Good luck and let us know if we can be of any more help.  

I'd pursue lyme testing and treatment (FYI.. even if you don't ever test Positive, lyme disease is supposed to be a clinical diagnosis).  

[skarey]

I was reading back on some of your old posts... yes, you definately need to be retested for lyme.  Even if it comes back negative, get an appt with a lyme literate md.  ALL your symptoms are consitant with lyme.  I saw your have ear pain and are sensitive to noise.. another classic lyme symptom as is neck pain.

Keep in touch and let us know what happens.  I'm curious, as our symptoms are VERY much alike.

[meubanks09]

Thank god...

Thank you all so much... you guys really brightened my day and gave me some hope. I have a doctors appt with a regular MD tonight...

I'm going to ask talk to her about Lyme and see what happeneds. If she doesnt seem like she wants to help then i will kik her to the curb and find a LLMD.

I am going to try and talk to her about disability too. My job provides us with short term disability coverage, and i have purchased LTD coverage as well. Hopefully I wont need LTD... I always kinda assumed you had to be diagnoses with a serious disease or be in a wheelchair to get it. I asked my last doctor if she would write a note so i could get my missed days approved and she flat out said NO " I'm not going to do that if I can't really see anything wrong".. what a B*****

I have been bit by a tick... a LONG time ago.. I wonder if its possible that I never had symptoms and then it just kicked in 5 years later. ??
I distinctly remember the tick bite... it was like a big bulls eye on my leg.. and didnt go away for about a month. My mom told me to go to the doc.. but being a dumb teenager at the time i ignored her... and brushed it off cuz i never " got sick" like she said....
stupid me!!

[skarey]

If you had a bulls eye rash than you almost indefinately have/had lyme disease.  

[gorbybelle]

Lyme can apparently lay dormant for months or years  - sometimes a stressful life event can trigger the disease to become active.

I agree with 'Skarey'  - the fact that you had a bullseye rash makes it almost certain you were infected.

[meubanks09]

Stressfull life event could have been... childbirth? with husband getting laid off and bankruptcy??? LOL

My doctor kind of brushed off the idea of Lymes... She came into the office and said " How on earth would u get bit by a tick in the middle of winter?" I told her it was from a long time ago.. and she said it was very unlikely. She ordered a MRI.. im sure the MRI will come back normal. Then I will have to do a western blot test...

[GMK50]

Wow, when I read your entry I felt like crying, you have some of the exact same things going on as I have had for the last 5 weeks!  

Long story short, I was an active, healthy 29 year old woman that was on cloud 9 after getting engaged a couple of months ago....then one day, as I was going about my daily business I became dizzy....about a day later I was still dizzy, but then my face began to go numb, to the point where my tongue was numb and I could barely taste.  I remained dizzy for about 8 or nine days but the numbness subsided for a few days.  While this was happening, I went to my GP who ordered a slew of blood tests to check B12 levels, Iron levels, blood glucose, thyroid, electrolytes, and for auto immune diseases (RA, lupus etc).....all of which came back negative.   My doctor referred me to a great Neurologist in Chicago at Northwestern, who did a series of tests to check my reflexes, balance and ability to gauge pain in each side of my body.  He asked that I go get an MRI “just to be sure it isn’t MS”, which I did....that test came back (in his words) "completely normal".  The woman who administered the MRI told me that this particular doctor worked a lot with MS diagnosis, which made me feel more confident in his prognosis.  

A few days after I had my MRI, I started to get a ton of new symptoms:  it started with tingling in my feet and hands that would stick around for a few hours or come and go throughout the day.  That quickly turned into severe shooting pains in my hands/feet/arms/legs (that would last about 30 seconds then go away), and when I woke up in the morning the bottoms of my feet were killing me (painful to walk).  At times it felt like a tourniquet was around my wrists or ankles because my hands/feet would 'feel' swollen and the veins would be bulging (to the point that my fiance was literally freaked out).  My neck has been absolutely killing me, despite taking the prescribed Neproxin my doctor gave me, and I also get these weird "mini migraines" that last about 1 minute then go away.  Finally I have this weird facial pain that is different than I've ever experienced....feels like a balloon is under my face and it expands to a point where it was almost unbearable.  All of the aforementioned things have been day to day, nothing is constant so I've been keeping track of everything I'm experiencing.  

Thanks to the help of the wonderful people on this forum, and to hours of personally doing research on different conditions, I’ve narrowed my list down to some possible causes as well:  Lyme (haven’t been tested for it yet, but I used to go camping in Wisconsin every summer,  one of which ended up in a weird rash I wasn’t sure was poison oak or the result of a tick bite…either way I will definitely be finding an LLMD to do the test), Fibromyalgia,  a Viral condition (viral meningitis?), or simply stress/anxiety (despite the fact that I don’t feel stressed, you never know how your body physiologically reacts without conscious effort).  It sounds like you’ve come to similar conclusions as well particularly in the case of Lyme having had a bulls eye rash…..but let us know how your MRI goes…..I go back to my Neuro on Monday just to identify other possible neurological conditions that could be causing these symptoms.  

[bingogirl703]

I have the same rotten stuff going on in my life too. I had a bullseye rash about 7 years ago and never went to dr. either. ( no insurance)a few months later I had a bout of what felt like arthritus in both knees, walking was awful painful and my knees felt hot.,. But it subsided. Now about 2 years ago I woke up with my left ribcage feeling numb and my left arm and forehead area was lightly numb, Coming and going numbness, comes and goes still. Now for about 6 months my left arm gets tingling and go to sleep when i move my head just right and im tired and feeling weak sometimes.  Under my left ribcage I have a full feeling like my spleen is huge. that comes and goes too. Some times it feels almost normal. I wonder if it is lyme or parasites!! I hope you feel better soon. Anybody out there feel like me ???  Please post.    Judy   ***@****

[meubanks09]

Girl,
I am so sorry this crap is happening to you too. It *****, for real. I am about to fire my "new" doctor. I kept insisting on her doing further testing for Lyme disease but she just brushed it off, like there was " no way" I had it, if the blood test came back negative. I went onto the Lyme disease foundation web site and got a doctor referral for a LLMD. The closest one to Chicago is in Fon Du Lac , WI, a 2 1/2 hour drive. I think I will be worth it to make that drive. My primary care doctor and I are really not seeing eye to eye I don't think. She thinks I am just " depressed" cuz I started crying in her office when explaining how horrible these last few months have been. She may be right, I think the disease is MAKING me depressed, but depression is not the cause of all of these symptoms. Lyme Disease is the only disease I have found that causes the soles of your feet to be sore especially in the morning. Lyme disease also explains every other symptom I currently have, or have had.

The symptoms keep changing, and sometimes they go away for a couple weeks. I have been waiting for another "break" to come.. but so far December and January have been KILLER :*( Hopefully you will get a little break form this to. Just dont think like I did and assume whatever was wrong is " gone".... It comes back, and usually is worse when it comes back. It's like it Flares up or something.

Since you and I are both in the Chicago area, if you come across a great doctor that doesn't look at you like you are crazy, and acknowledges that you may have Lyme, let me know. I will do the same. I am going to a neurologist  next week, as my MRI came back clean. Hopefully he will have some insight for me and not be another waste of a $30.00 co-pay. LOL. I am also going to call the LLMD and see when his next opening is. Hopefully I can find someone to watch my kids for the day and take a trip out there.

keep me posted  on how things are going and I hope u feel better!

-Monica

[GMK50]

So, just to give you an update...

I went back to my Neurologist this Monday to check in with him because I was still getting bouts of dizziness, temporary facial numbness, and pains in my arms/legs/hands/feet.   This time around he really didn’t do much for me – he said, ‘we’ve ruled out the ‘major’ things such as MS, so it just sounds to me like this might be a case of “Viral Neuralgia.”   When I looked up what that meant on the internet, it said that ‘Viral Neuralgia’ is a blanket term for many viruses that impact the nervous system, one of which is Lyme disease (not shocking).  None of my doctors have ever suggested that I get tested for Lyme, and based on some of the posts I’ve seen, I’m not surprised…I was sort of hesitant to bring it up because I’d already been to my GP and neurologist twice and the second visits were more ‘brush off’ and ‘it will go away’ sorts of visits, so I thought I would just hit a brick wall.    

This week I emailed Igenex (one of the labs that provides the ‘full blown’ test for lyme, as I’ve been told from people here on the forum), to get a free lyme test kit.  I’m hoping to have the sent my way so I can just have my doctor sign off to administer the test (if that’s how the process works, I’m not quite sure).   I did the same thing you did and went onto the Lyme association website, to look for a doctor’s referral, but the closest LLMDs are in Wisconsin….worst case scenario, I take a trip from Chicago up to the Dells, a few hour drive is worth ensuring you get the treatment you need I suppose!

This all just makes me wish I went to med school, it’s frustrating not being able to fix yourself.  Good luck and let me know if you guys have any new developments!

Gina