You may want to do some reading up on neurological Lyme disease. It can present with many symptoms similar to MS. It can affect vision and cause a myriad of problems once that bacteria gets into the pristine environment of the central nervous system.
You don't have to recall a bite of have gotten a rash to have Lyme. There are also co-infections that can occur and these cause strange symptoms, also. Lyme can evade detection in BOTH blood and spinal fluid. All of the tests for Lyme are very unreliable.
I had neuro-Lyme and the symptoms were absolutely horrifying. Some were so bizarre, I cannot even put them into words.
In order to be properly tested for Lyme and its co-infections, you must find a Lyme specialist. Try posting over at www.LymeNet.org and see what you can find out. Lots of knowledgeable folks on the site.
Thanks for the info on Lyme disease. I've seen a lot of posts on the other neuro forum re: Lyme and how the basic test for it (which I had done back in '99) is not sufficient to rule out Lyme. But I will definitely read up more on this, as it seems that many of the symptoms are similar to the vast symptoms of MS, and when I go to Mayo next month I am going to mention the other tests (Western Blot?--I will look it up) to the neurologist there to see what she thinks--because if it is not MS I want to know what it actually is-whatever that may be.
However, I really think I have an autoimmune disease (whether MS or some connective tissue disease), as every time I had an onset of new symptoms or exacerbation of old ones it was concomitant with an infection (not sure if this is true of Lyme or not). Also, hormones seem to play a big part (I actually became semi-parylzed on my left side in '99 with ovulation and have noticed ever since my symptoms are exacerbated in the extreme when I ovulate (I know exactly when that is, as I have always had pelvic pain at the same time). Heat also exacerbates my symptoms and I'm not aware that Horner's syndrome has Lyme as a potential cause, but I will read to see if there is any link. And autoimmune diseases run in my mother's family, connective tissue as well as MS in a cousin. But I definitely will read more on it before my appointment next month. Thanks for your response.
Do you have Mri brain & spine report? Something has to be on the
report since you are having these clinical symptoms along w/
Horner's. If report says 'found nothing = all normal' someone
goofed on the read. One of the brain lobes would have come back
with an unexplained signal. As w/ your leg problem. Lack of
movement would show some spot in 1 of the frontal lobes. You
need a new mri or re-read. Get copies & also a LP to ck for
rings in csf. This picture is off.
I'm having trouble thinking & typing now. Your story has caused
me to tear up. Which Mayo & when? Don't answer if don't want.
I'll try to locate some info for you to net read but need some
time to get my thoughts so I don't throw you off. At quick
thought & there's always exceptions, Horner's generally starts
from a ICA (internal carotid artery dissection), a clot breaks
off wall & travels. Often within 15 days or?, a cerebral
ischemic stroke happens causing symptoms you've described. This
can then lead to cervical artery involvment. The Brainstem gets the lesions. The Medulla is there. That controls breathing/BP/
heartrate/digestion & then affects the cerebellum that
coordinates muscle-movement & speech. Sounds like these all
followed your Horner's. W/o contrast, lesion could've been
overlooked but not the pattern/symptoms. I believe you had a
stroke or some type of infarction that went to pointing the
finger to the other Dr that missed it & on. Yes, radiologists
miss things & neuro's are use to reading just report. Could
even be neuro didn't request 'w/ special focus to stem'. Make
sure they pull up c-spine copy but not sure much will show. It's
difficult to read C1 at skull base w/o contrast. The chest pains
may be from Thoracic region where some vascular constriction
happened or infection. Your heart was wk'g overtime. I'm just
stund & consider yourself hugged. Mayo should take care of you.
They are a teaching facility. The MS lesions would not be where
they were looking or within norm. area to dx. I'll get back to
you but need to think. Mayo has a packet of info & forms to fill out so maybe they'll mail upon request. Just tell them you
write slow do to slt-paralysis or need help. Write later.
Thanks for your response.
I do have the report from the brain MRI from 2002 (as well as the actual films) and it says that nothing was found. I do not have the report (or film) yet for the C-spine done in 2004 but will be picking it up this week, as I plan to take both films to Mayo next month when I go for the neuro consult. But I was told by the neuro in 2004 that it was also normal. I also had a brain MRI in '99 w/o contrast about four months after leg weakness started and it was normal too.
As far as the Horner's syndrome, that was the very first thing I had, but I don't know if it is even related to the stuff that came later (a gap of about four years until the fever/chest symptoms started in '94, the right blurred vision and right mouth droop in '98, and the return of chest symptoms and new-onset left leg and arm weakness in '99 with bad intestinal infection, and later swallowing difficulty-still have thumping on left side of throat when swallow, but no choking now). The Horner's started in '90 and the anhidrosis and ptosis lasted about 2 1/2 years. The smaller left pupil only lasted about a few months from what I remember. I think I got the anhidrosis first (my face, neck and chest) and then the miosis and then the ptosis, but not positive. I know they didn't all appear at once but one right after the other. I didn't see a neurologist til '91 after moving back to FL. All he did was a chest x-ray. I didn't have good health insurance at the time. He said it could be caused by a chest tumor but that that would be highly unlikely and it was probably benign. But I have been reading more on Horner's just recently (because I have started to think it is related to the later symptoms), and my understanding is that if the anhidrosis goes below the collar bone then it is a first-order/central lesion that either involves the brain or spinal cord (not a second-order that would have chest tumor as etiology as he mentioned), and everything I read lists the causes as brain/neck tumor, syphilis, CVA or demyelinating disease (MS).
The more I read the more I think the Horner's was the very onset of my symptoms and the more likely I have MS. BUT, and I know it's a big one, my MRIs done in '02 and '04 were normal. Do radiologists actually read them wrong very often?? I know anything is possible but I've thought it very unlikely. But that is why I made sure I picked up the actual films to take with me to Mayo. And hopefully I will be having new brain/C-spine MRIs and, if they are still negative, a lumbar puncture to find out definitively whether it is MS or something else. I just hope if it is NOT MS they will do other testing, as I seem to have autonomic neuropathy as well (just dxd with severe gastroparesis, but have had symptoms for years, slow heart rate (don't know if related either), and slowed breathing.
When I pick up the C-spine MRI this week I will post if the report (if it is in with the film) says anything was found, but I seriously doubt that will be the case. If so, I obviously should have been informed of such, so I know it's unlikely scenario.
Thanks for your time. I appreciate the time/knowledge you contribute to helping people on this board know what tests/potential diagnoses they might want to pursue since we all can't get a question in to the "good doctor" on the other board. I'm hoping I will get some answers (though afraid I won't) next month and will post what I find out, if anything.
You almost sound like you're back-peddling on your symptoms. I
think you're anxious but looking forward to appt. Maybe I over-
whelmed you. I love to be wrong! I do think you had a stroke &
there are many types/lengths/symptoms. Glad you got a lady MD.
You'll feel more comfortable but keep in mind, try not to link
this too strongly conversing abt your ovulation or you will be
written up for a hormone evaluation/testing that will change
focus to that & you'll have her searching for answers to your
cycle. To much info does that. I'm not w/ Mayo & for yrs. hated
even the mention. I suffered alot from an undx'd problem. I had
a great Dr that tested/referred/would order anything I asked.
He was perplexed. My career flushed/folded. Went to top docs!
Over 9 yrs we decided the lab wk was showing I was dying. I put
my life in order. He went beyond any Dr's help since he was stumped. I had an idea for a certain very old scan. Slow & w/
antique imaging. I got home & the ph. was ringing to tell me
he's trying to find a surgeon. I had 4 major surgeries in 8mo.
& did almost die. In '94 one referral was to AZ Mayo. I saw the
'head' top doc of the dept. In 10 min. I was dx'd as wasting
his time & going to a fruit-cake Dr, actual words. It took 3 mo.
to get in & I was dismissed! Get therapy. A quick lite in my eyes & zip. I passed out in park'g lot from shock. They all
acted god-like there. End result, no comupters back then but
dx'd myself practically & I'm alive. The mystery was solved
when my Dr retired & a packet was accidently sent to patient's
hm.(me) & not to new MD. It had yrs of 'dictations', letters
that are MD to MD. My (1st neuro-referral) was getting an award
same day as my appt. He was THE big MD. His focus was on self,
not me. He missed the problem. Later next MD got films/file &
called him on it. Dr's have a code. Cover other's butt. 'Alter
dictation to pt's MD to say undx'd' & you get trip to Hawaii.
I still have 26 letters that make me the sacrifice for ego.
They protected their own & Mayo doc rec'd fax pre-appt. My MD
was getting lied to since he was older/retiring soon. Yes I
could've had licenses pulled but that would go on records & no
Dr would take me. My MD wasn't a player. Old MD still sends me a holiday card from Holland (retired). He feels betrayed by
colleagues/never thought this went on. Mayo in FL. has good
reputation/you'll be in a neuro-movement dept. I wk'd for MD's
for yrs & if you think staff is bad, I heard the Dr's on the
phones. Many are caring. Others are just like I got. Always get
copies/make them work/don't say 'the net'/photo any test request
& act like you think she walks on water & not your buddy. The
surgeon that saved me, didn't get the memo till later. He's in
partnership w/ the 1st award Dr. but different location. No one
knows that I know. I have life time fol-up so I zip it. I think
your on your way to getting better. Gd-health.
The Horner's (left-sided) that I got back in '90 (2 of 3 symptoms, anyway) only lasted about 2-2 1/2 years; miosis only lasted a few months. I had no other symptoms at the time-was not feeling sick in any way-not even a headache, nothing. I didn't/don't have high blood pressure, either, if that makes a difference. I know CVAs can cause Horner's, but mine seemed to appear without any other symptoms. Since the neuro in '91 that I saw said it was probably "benign" and since I didn't know anything about medical stuff back then and was feeling fine otherwise, I never gave it much thought until I actually got sick after an RTI four years later in '94-that's when the low-grade fever with chest symptoms-constant mild to severe pain, weak tired feeling in chest, slow pulse, physical effort to breathe (almost a mechanical thing) all started. I have the constant chest discomfort (pressure/constriction feeling, weak chest thing to this day, but it is not as bad as when first started--at least the pain, anyway). I have no idea how this fits in with the later stuff, but I believe it does. It wasn't until '98 that I got the blurred vision in my right eye/color discrepancy when closing one eye then the other, right mouth started drooping, then mild left leg and arm weakness and trouble swallowing in '99 after a bad intestinal infection. I only BRIEFLY had severe weakness/semi-paralysis in '99 with my left leg suddenly becoming weak (dragging, almost unable to walk) and my speech becoming slurred with my right mouth pulling to the side (initially unable to speak at all). The person I was with thought I had a stroke, but none of these symptoms were new, they just suddenly (within a few minutes) became severe, and later on that night I got pelvic pain (which I always have with ovulation). This has been the pattern ever since--I have not gotten the semi-paralysis since, but--I have extreme exacerbation of all my neuro-type symptoms as well as the chest weakness/discomfort/slow breathing during ovulation (exacerbation lasts about 5 days each time): left leg and arm get a heavy feeling with tingling in foot/hand, feel fainter/chest discomfort worse/breathing becomes slow and shallow, right upper lip pulls down, etc. My symptoms also are exacerbated by heat, though transient and not as bad. And infections seem to trigger off new symptoms/exacerbate old ones. That is why I am careful about getting infections. I guess it is possible the Horner's was due to some kind of CVA-I'll probably never know for sure-but I tend to think it might be due to demyelinating disease. However, the negative MRIs thus far. I know it's confusing; hence, no dx after all this time.
I am going to Mayo in Jacksonville in a few weeks (you sound like you might have some connection to the Mayo Clinic?) It looks like I will be seeing an MS specialist (they already sent me the forms to fill out, etc.). It's a woman MD-for which I am glad. Hopefully I will be able to communicate with her better and this experience won't be a repeat of neuro consults in the past where I was prejudged/dismissed before I even opened my mouth due to history of anxiety and past depressive disorder.
Thanks for sharing your experience at Mayo in Arizona and all that you went through trying to get a dx. I had to read what you wrote three times to actually absorb it all! I assume you had something pretty seriously wrong--you didn't say what, so I won't ask--that hopefully the eventual dx and surgery helped with. But what you wrote is really disturbing--not that I ever thought all doctors overflowed with integrity. I've had my share of curt, arrogant Dr. Pricks with egos the size of Texas and I also know that doctors routinely cover their own and each others' behinds, sometimes at the expense of the patient. I understand their fears and wariness regarding lawsuits, as there are a lot of unjustified ones, but nothing justifies what was done in your case. I gather several doctors were involved in either intentionally not communicating test results to your doctor and you and/or rewriting dictations to cover their tracks. I hope that what was done to you didn't affect your overall prognosis in any way. I'll try not to be paranoid when I go to Mayo next month :)
Here is the flip side. There was a doctor in my hometown who was just convicted of defrauding Medicare big-time. He did the exact opposite of what was done to you (ultimately not as life-destroying, but despicable none the less): He performed Mohs surgery on scores of older patients, telling them they had cancer when they didn't. And he took off the most layers of skin he could (apparently they get to charge Medicare more according to the # of layers). His office staff were just as corrupt as he was (as well as incompetent), only they had their own agenda. They knew what he was doing and got together among themselves and decided they could also make some money. I'm not sure if they tried to blackmail him or tried to "collect evidence" so they could report him, but one of his lab girls messed up a patient's slide so she decided to stick a piece of stretched out Bazooka bubble gum on it. And guess what--he even diagnosed that one as melanoma. He just got convicted of, I believe, 20 years and has to pay back the millions his greed brought him. Most of the people never even had cancer but suffered the anxiety of thinking they did; and some apparently don't know for sure whether they did or not. Nice guy.
My daughter suffered leg weakness, petite like seizures, neurological changes after taking Cipro and avelox. She totally lost her ability to walk for 3 weeks. Please look up quinolone antibiotic side effects(toxicity). ALL her tests were negative.
I have been on Avelox and cipro on many occaisions due to chronic sinus infections and have read some of the side effects. They are scary.
Good luck and hugs
Mayo Clinic in Arizona, Does anyone have a good experience there with any one particular doc? I have been thru this at UCSF and with what it takes to go to the Mayo Clinic, I don't want to have another experience like this again. I am wondering since I don't have acceptence yet, when it comes can I ask for a certain doc there. How would I find out?
hugs to all,
cynde aka flowerfloosey