As many of us have discussed the diagnostic proceedures of diagnosing MS and the McDonald Criteria.Quix as usual done an excellent job of posting the MRI criteria's.
Many here have had brain MRI's with and without ,some without contrast and they came back normal and Drs have dismissed them.We sure have roasted many DRs.But maybe its time to start targeting the radiologist departments.As many neuro's go off the radiologist reports.I know that sounds harsh and a neuro should reveiw the films.
I had a series of MRI's two weeks ago.2 and a half hours stuck in that tomb.It just happened to be that the tech had done all my past MRI's and when she came in to give me the contrast I ask her if these were the standard MRI's for the MS protocol and she stated yes,Its a T1.5 machine.I told her they always came back back normal but the evoked potentials were abnormal.She said she'd see what she could do and that was the end of the conversation.She ran the normal MRI's then intensified some of the images through the computer imaging.I don't recall all what she told me,unless specified its not normally done.
The radiologist had read the films and stated all was with in normal ranges.I had received a copy of the MRI films and had sent them to my old chiro who took them to a neuro radiologist who reread them.
The findings came back lesions near brain stem ,lesions in the c-spine and in the lower thoracic along with the the brain atrophy and black holes.
The spinal lesions and thoracic lesions now explains all the bizare and strange feeling my body has daily.
I shouldn't get down on the radiologist as they are trained to look for huge white spots as I spoke with the local radiologist and sent a copy of the report I received back.She stated that the lesions in the spine were incidental.Incidental my hiney these are crucial to a DX.She stated that without contrast they were dark in orgin and with contrast they showed up in little white clusters.Except the lower thoracic which was a thin bright white line half the length of a vertabra.well excuse me thats important for my DRs to know this.
The neurologist really need to look past the brain and focus on the spinal aspects as this disease effects all the white matter just not the brain.
All that are undiagnosed push for the spinal mri's and if need be get them reread if in doubt,it can be very crucial to a proper DX.
I knew going in for the MRI's I had brain atrophy,much in the occipital region,causing visual impairment and the black holes.
Craig ,I thought of you and all you have went through with your DRs,I now have an understanding to the leg problems,spasms ,weakness ,buzzing and so forth.Now I know why I have the problems with the electrical shocks running through my spine.
My point to everyone,even though I had a Dx,and I didn't meet the McDonald Criteria to a tee, I had to know, why wasn't I getting any reprieve from my symptoms,why was my vision deteriating,why would my right leg not move when I wanted it to.I had to have concrete answers besides evoked potentials.
Keep your search GOING!!!!! You know how ya feel and what your feeling.
It has taken me a week or so to adjust to the news and that the disease modifying meds aren't going to help me at this point.Thats okay, I know now why I've had the multiple relapses and in time I can deal with it all.I plan on continuing going to the fitness center 5 days a week,keeping my sense a humor have lost it for a week or so and refuse to let this invisable disease get me.Except the bad days but love the h e l l out of the good ones and I'll continue my maintence meds to lesson the symptoms and PRAY PRAY and PRAY !!!!!!
Oh wow, I just can't believe what you wrote. For all the suffering you have gone through and not having the MRI read right. I'm so sorry for the news you have received, although it does explain to you why it is happening.
I will be praying non stop for you. I do hope the meds will lesson the symptoms too. I am so sorry you are going through this. But for the short time I've known you, I know that your humour will come back and the inner strength you possess will see you through this.
Are you saying that you've not shown lesions before? I guess I'm not understanding. You meet the other criteria, but not lesions on MRI? I know you show atrophy or something. Please explain more, so I understand. What is your diagnostic MRI history before now?
Also -- I have looked at my CD of my brain MRI, and there are teeny tiny little white spots in a few slides. I think they could be blood vessels or something, but they are just on one side.I am so desperate for a diagnosis (no other testing, like evoked potentials yet), that I am probably making too much of the dots.
Anyway, thanks for the post! Very important. I think radiologists are variable, too. One can certainly be better than another. I wonder what Mrs. Burbanchick has to add....
Take care and feel better. Any more thoughts on the LDN? I know you have to wait a while...
I am not suprised by what you have found out by seeing a neuro radiologist. I totally agree that we all know when something is not right and just because one radiologist might read our films and say "within normal limits" they do not know our history or symptoms. Just as there are quite a few weanie neuros out there - there are just as many weanie radiologists who do not have the time or experience to look further into our films than they want to.
Just like Quix's UBO!! She would probably had been diagnosed much sooner and maybe would not have the level of disability that she has encountered had they put the whole picture together sooner.
You are such a blessing for thinking of helping all of us when all this is going on for you!! Thanks for sharing this - I have learned alot!!!
Thanks for the prayers,I'm really trying to pull out of my slump.
I was DX'd on brain atrophy consistant with MS, a VNG(done buy a Neuro ENT) positive for lesions near the brain stem and left side of my brain.Past optical neuritis abnormal vep.Borderline LP with highly elevated myelin basic protein.I had transverse myelitis and ON in 1998.
My MRI history was cleared besides atrophy and black holes before now.The atrophy and black holes remain but the c-spine and thoracic are showing lesions now.These mri's were read by a neuro radiologist out of a hospital in Michigan,compliments of a good friend and retired chiro who said send them to me.
I come from a rural area and not all technology is up to date.I'm not saying that the radiologist didn't do her job as she is a very nice person and well respected at the hospital,she read the mri's and in her honest opinion thought the lesions were incidental findings,so I took it upon myself to have them independently read for my sanity.
MS effects everyone differently and lesions may not always be seen on a MRI,thats why evoked potentials are done.I had the VNG done do to dizziness,off balance.I do have a peipherial sensory hearing loss in both ears and also a peripherial vestibular disease.Never investigated that one.With the VNG it shows INO/BINO a form of nystagmus associated with MS.
This disease manifest itself in many ways,some suffer with unexplained symptoms for years before lesions are detected and others have a dx in a week.We have a natural mechanism in our body's to repair itself and our body's can repair itself to a certain point and when it can no longer do this the myelin sheaths break loose and cross the blood brain barrier,producing the lesions.I hope I got that right.
I havn't give LDN anymore thoughts as of right now.I'm not able to go off the pain meds yet,soon as I can I'm gonna give it a try.
I was shocked when the radiologist stated within normal limits,I have brain atrophy,HELLO my brain has SHRUNK!!!!.
I just want everyone to know,not to just stop,if its not normal don't except come back in 6 months.
My disability is permanant,the legs won't get better, the vision is going.If they caught this INVISABLE disease sooner would things be different I don't know.
Theres options out there,theres DRs out there,its searching for them and it doesn't have to be a neurologist or a MS specialist to diagnose MS.My electro-muscular DX'd MS back in 2004,but with insurances the way they are it had to be confirmed by a neuro inorder to start the disease modifying meds.
So all you searching for DX ,keep searching go to every specialist you need to rule everything out and if you don't like the neuro's opinion get a 3rd or 4th if ya need to.
I got ya~ I thought they had found lesions in your brain MRI before now. How amazing that this radiologist got it so wrong. I mean, with your history. Also--About the VNG--I have sensoryneural hearing loss -- I wear hearing aids. And my audiologist has observed 'vestibular' nystagmus when I've been in her office. Whatever that means... I know I have the kind where when I'm trying to read, my eyes go back and forth, as well. But they also do the loopy kind of thing like in her office. Circular. Do you know anything about that? What does VNG testing determine? Does it confirm MS--CNS? Or is it peripheral?
I hate to bug you when you're not feeling well, so take your time. I'm in no rush.
How did your son's team do in footbaall? Did they make it to the championships? Does that mean you're still in there? What are you doing for Thanksgiving?
I'm proud of you T, and I'm glad your pulling yourself out of it, after digesting it all. I'm glad you've been given this clarity.
Like you said, your body is what it is right now, but at least you know for sure what is going on. So very hard to continue on as you did for answers, especially with physical limits on top of frustration (and at times idiots). . . .Your an inspiration to us all.
A VNG will explain if it is a symptom caused by your peripheral system or CNS.It does not confirm MS,but has the capability to detect lesions in the auditory and visual system that is a CNS disorder like any other evoked potential.
A VNG is a 3 part test to where you wear googles and have a couple of electrodes pasted to your head.
1Ocular motor test --they have the lights out and they have you follow a red light on a black lit bar this measures your ability to track the light(I flunked with flying colors)
2.Positional gaze test where they lay you down then back up head side to side to check .(bed arobics)this done to see if they can induce vestibular nystagmus
3.caloric testing they put warm then cool water into your ears,nystagmus is induced and should be present.
All this is recorded on a computer screen and it detects if there are abnormalities going to the brain or the vestabular system.
Mine was my brain and peripherial.It was definately a test in my favor.It explained alot.My eyes when they go to the left the bounce and jerk back really bad,some days I can feel it.Thus coming back INO/BINO a form of nystagmus.
Until I researched INO/BINO many did not know that it was associated to MS,MS is the most common cause of INO.
And no you are not bugging me.Many don't know about the VNG as an evoked potential as so many DRs rely on the VEP and the SSEP.
My son's team got beat in the first round they hung tough,its to cold for football,its now wrestling season.Thats indoors.Thanks for asking.
ThanksGiving I'm going to my sisters,we switch years,I had it last year.
I was on neuro number 5,but GP did not like the way he handled my last attack so I'm back to neuro number 3 whom has an ego problem that I think I can tame.And boy is he good looking.
Unfortunately, my neuro is good-looking, too. You're single--I'm NOT! I want to stick with him just for his looks/personality, because we laugh like crazy when I have an appointment (when I'm not having cognitive impairment, then I'm just a dumb fool, but he's sweet and kind), but my patience is wearing thin. I have no visible lesions. So, he's not thinking MS. He, hinself has CFS, and told me all about it last appointment. So, he thinks I have it. Maybe I do.Heck, I'm not a doctor. Quix thinks I have MS. She knows me alot better than he does. I just have a feeling it's MS, too. Something's just not right. The paralysis. That's not CFS.
Anyway, I really have to run. My 7 year old is singing in church tomorrow. I'm in Michigan, in your time zone. So I have to read him a quick book. I'm having "Steaksgiving" at my house on Friday. Thanksgiving is at my mother-in-law's on Thrusday (yum-yum), and then MY family comes over for Steaksgiving." (My mom forgot to turn on the oven one year, so the turkey didn't cook. We had steak instead. It's our tradition now!) So, we've been cleaning all week, and I'm crampy as all get-out. Thank goodness for my husband, He hasn't complained about me a bit. I take frequent breaks. He's a workaholic. If you ever remarry, I would suggest a workaholic!
I'm glad you've moved on to indoor sports. We're doing basketball now in middle school. Fun! My sixth grader is thrilled. He didn't make the team last year. His legs have caught up withhis body this year. He's so smart. I'm glad he has a sport this year, though. Team sports are wonderful.
Good luck with wrestling, and thanks again for the information. Kinda wish you didn't have to know so much, if you know what I mean....
Hang tough, like you always do! At New Years you'll look back and be proud at what you've been through this year. I'm proud of you!
I gotta get somethings done today and I've made a list and gonna slowly get it done.
I'm single,not divorced,we are legally seperated.I can look but not touch.Someday we may work things out.Only time will tell.
My neuro is very compassionate,he should be in a good mood tomorrow,he was at the ohio state /michigan game.He's a big Ohio fan.His son is autistic,so he's very caring.If he ask me my age one more time I'm gonna bop him.Last time I told him I was gonna be young when my last one graduates and his oldest won't even be out of school.Ha-ha and he's 46.
I lived in Michigan for 12 years and loved it.2 of my kids were born there.
Thats great that your son is smart, a good public education will reward him with college scholarships in the future.
My oldest daughter is dyslexic(I know I spelled that wrong),my Navy daughter turned down west point to become an electrical nuclear(sp) engineer,Say that one 3 times.She's very intellengent.
My son a junior he's taking 3 college coarses and he looked at me the other day and said why,I plan on going into the Army.He plans on doing boot camp this summer before his senior year.
My youngest will be 16 when she graduates,she's in the 8th grade and taking 2 high school coarses.They got brains from someone and I know it wasn't me.
Sports are wonderful for kids,it teaches them team work,disciplin and its just all around fun for them.I have a rule that ya must be involved in two school activities being sports and 1 academic activity.It keeps there grades up and they stay involved.
Follow your gut feeling,I know many of us that have had to go through heck to get a DX had to fight hard and find a proper DR.You seem to like neuro number 5,I beleive that CFS exits but also feel that its an underlying cause related to a bigger picture.
We done steaks for many years at Thanksgiving when we lived up there.We'd come home and have Thanksgiving the weekend before.I'm all for that any day.
We have steaks and french fries every Christmas Eve dinner a tradition since I was a kid and finger foods on Christmas ,so we all get to enjoy the day.
It would be interesting if your ENT did do a VNG,just to see if the nystagmus was vestibular or CNS.
HI. Thanks for filling us in on what has been happening. I am so happy you were able to get your films re-read. You have a lot of intelligence yourself...that's where your kids get it. And courage too, you have a lot of courage.
I have had thoracic mri studies done but lesions are never seen. However, I also had a bone scan done on the thoracic spine and there is "unexplained uptake" at area of T 12. That is where all of my pain is and where I have the throbbing pulsating pain that radiates around from the T 12 area to the stomach and then makes my stomach ahve spasms.
I wonder if the "increased uptake" is a lesion??
Also, T, I had SSEP done on Friday. it took two hours and the technician kept saying she was having trouble getting a response on the right leg. yet most of my weakness is on the left leg. How were your SSEP results??
So is your MS Primary Progressive? Why do you say there is no other drug for you? Can you keep me informed on what you think you will do with LDN??
Hey, Craig! I posted a note to you on the other thread. I sure hope you start feeling better, my friend! You and Elaine need a break! And that 'perceived leg weaknees' of yours must have been picked up by the SSEP, I see. Kidding, of course!
Hang tough! I think Morrow is going to be your man....
It sounds like your kids take after their mother. Smart as can be!
I wondered about your ex-hubby. He sure does seem to be there for the kids, and stood up to the plate when you all needed him when your home was broken into this year. But, like you said, you still have eyes, don't you? ; ) My husband likes my neuro, too. He's very personable and really takes a lot of time with us.
Your kids sound great. It sounds like put on a tough face for them when you feel you need to. They sound smart enough to know when things aren't quite right, though. I know we want to protect them from the tough stuff. I think it's important, too, to be brave in front of the kids. Sometimes, the definition of brave changes from day to day. Depends on how I'm walking....
We do love Michigan, all the lakes. The change of seasons, which you still get. We have the opportunity to live where we want, with my husband's present job, but we stay near our families. It's home. The children are happy here, established. Don't ask me in mid-January, though, when it's bitterly cold, too cold for snow, and everything's gray and not a smidge of sunshine....
I would be interested to know about evoked potentials. I hate to come out and ask for tests. I guess I think it undermine's the doctor's authority or something, it's insulting. But I'm getting so impatient. Tuesday, I'll see what the endo says. I think I told you he suspected MS in the back of his mind. I'm going to tell him I know that 5% of MS patients don't have lesions on MR images. He's good friends with my neuro, and they will consult together on my case. So, I think I'll make my case to the endo, and hope he makes my case to the neuro, who is SO hard to get in to see. I have an app't Dec. 13.
Anyway, take care of yourself. I'm so sorry about your vision. You're so young. Maybe you'll be able to get off your present meds and can give LDN a try. Lifting prayers up your way.
Oops! Sorry I was mid-message to T before dinner. Didn't see your post.
My study is this Tuesday. Unfortunately, my other blood work was normal, so I almost feel like this is going to be a waste of time and money. All those tubes of blood he took, the hormone levels and such to determine whether I had 'hypothalamic dysfunction' were mostly normal, he told me on the phone. He sounded so disappointed. I am, too. He said if that had been the trouble, he thought he'd have me feeling better before Christmas....
Anyway, I'll do the study to say I've tried it, I suppose. Looked under every rock.I just wish I knew what it was, once and for all. If it was psychiatric, I'd even accept that better than this lingering....I'm sure you know all to well how that goes.
Hang tough. The end for you is February. I just know it. Feel well!
All my evoked potentials were abnormal.I do not have the results of the SSEP except for a statement saying abnormal.
Right now they are saying no LDN at this time,to stay on the rebif.
I just come from my egotistigic but handsome neuro's office and he said theres another disease process occurring,but he doesn't know what it is.I'm 41 with progressive leg weakness,he thinks that an exploratory back surgery could give some answers,don't think so.Have had 2 and not having anymore.
I am having another vep and baer potentials redone next week,plus a lumbar MRI.Which won't show **** because of the metal implants and rods.
They changed my meds,not happy about it,to help with the spasms its baclofen,valium and oxy 3 x a day but don't forget to take the provigil.So now I'm going to be a wide a wake junky,these are all addictive HELLO.
He never did give me anything for the mood swings and the depression setting in.
Zilla ask for the test,they ain't gonna hurt,it just gives them a more clearer picture to whats going on.I told my neuro today I need a psyc exam because I'm losing it slowly,he said your not nuts just complicated.He stated they may never know what the second disease process is,I told him he better find out.And I don't know is not exceptable.If its a muscle process then do a darn biopsy same as the nerves do a darn nerve biopsy.He said a nerve biopsy is dangerous and it can cause permanant damage,they do it around the heal,heck there ain't no feeling there and theres no reflex already and that foot flops anyways.
Its a great thing that your blood test came back normal,thats a blessing!!!!!!!!
Zilla, my hubby x or whatever is a really good guy,he can't deal with the invisable disease and he's furious right now with my neuro and not knowing the second disease process.He will be taking me to my neuro eye appointment on wensday.He takes me to do all my shopping and so forth and if I am relapsing and one of the kids call him , he's here.
Craig keep searching for answers,I refuse to give up on my legs,my neuro was shocked when I told him that I was going to the fitness center 3-5 days a week.He said well it ain't helping,I called him a dork,it ain't hurting either.It might be preserving what I have left.
The neuro is gonna send me to a back specialist,okay send me,could some of the leg problems be from surgeries 1998 and 1999 ,possible,but why after all these years would it start acting up.That area don't bend because of the rods.Last year I went from hyper reflexes in the right ankle to having none in 6 weeks.
First of all, God Bless You for all of your patience and perseverance. Now here is my opinion on whether or not the back problems could be causing the leg weakness. I have severe spine osteoporosis with 40 percent of the spine gone. So naturally when my legs started with weakness, everyone thought the weakness was caused by the spine osteo. So I went to four neurosurgeons and had seven spine MRI's from Nov. 2006 till currently. All MRI's showed no spine stenosis, no cord compression, no pinched nerves. the neurosurgeons said leg weakness can't be caused by the spine unless there is restriction on the MRI. I even sent my records to Cleveland Clinic spine center and they said the same thing. Finally, a neurosurgeon in July said that this weakness is coming from the brain and to get out of his office!!!
So unless you would see nerve or cord compression or have constant pain in the spine and legs when walking, I highly doubt the spine is the issue. I think the spine lesions are the issue.
the nerve biopsy does cause permanent damage., I remember reading it. however, the muscle biopsy is simple and not complicated. i would definitely recommend the muscle biopsy if you really want one. however, your muscle enzymes showing muscle disease would be elevated if you have a muscle disease. if the enzymes are normal (CPK, ALDOLASE) then don't bother with the muscle biopsy in my opinion. Some doctors would still do one though.
I think your neuro might just not want to admit that your MS is progressing. What do you think?? Is he playing mind games??
One last word, T. I also most likely have Cushings Disease. That is why I lost so much of my spine. The neuro-endocrinologist wants me to have pituitary surgery to look for a tumor and have half the pituitary removed. however, the neuro-opthamologist at natl Institute of health who felt bad for me because no one would give me a diagnosis, said this. he said yes, you probably have Cushings, but don't let it be a red herring to distract you from the fact that you also have a major neurological disease, most likely MS.
So, tell your neuro (if you want to) to not let any secondary disease be a red herring, or distraction, from the treatment of the major neurological disease you have.
No my neuro is not dismissing the MS by no means and he knows its progressing.He's still making me do the Rebif injects.
He is investigating arachnoiditis,which after researching it can be a factor to the lumbar pain and the extreme leg weakness and spasms.I've had 2 failed back surgeries with implants.I've had several myelograms.These are the 2 main causes of arachnoiditis.Theres no cure for it but can be controlled with proper medication.Basically treated the same way an MS attack is treated.The meds for AA are basically what I am on now.
No my neuro is a straight shooter and is very upfront with all his patients.Actually he called earlier to see how the new meds were doing and if they aren't working let him know on Friday.
He wants the updated vep and baer since I just had the updated MRI's.He's very thorough and beleives in updating all test results and to follow the progression.
He wants to check all avenues and doesn't like any stone unturned.He's really worried about the leg issues.I had a lumbar MRI I think 3 years ago and I beleive arachnoid adhesions were on the report.
I'd rather my neuro seek all avenues than allocate everything to MS.A red herring no,they are both neurological diseases at least with the disease modifying meds the MS can be slowed down.Arachnoiditis has no cure and can progress rapidly without remission.
So at the moment,I'm gonna enjoy my Thanksgiving and get adjusted to the new meds and get the MRI done on monday.
Its in the Lords hands now,Craig whats gonna be is gonna be.It will all work out in the end.
Hi! I am agreement. I was just diagnosed about a month ago after seven years. For almost seven years I HAVE POINTED THE LESIONS OUT TO THE NEUROLOGISTS AND RADIOLOGISTS ONLY TO BE TOLD THAT THERE WAS NOTHING THERE: only artifacts, or they were incidental, or they were of no consequence. I even showed the films to a neurosurgeon!
I begged for contrast and made sure it was approved before one set. The radiologist and technicican kept telling me they were okay and that I did not need contrast. I left, only after insisting that they be reread by a neuro-rad. I told them that I was personally going to take them to another specialist. When reread, they then wanted me to come back and pay for another $4,000 for repeat testing because they did not do the contrast. Like who's fault was that?
I then went to another neuro who dismissed the whole thing. I then had another one done and they refused, still, to do contrast.
I then went back to the original facility of 2001 where I had talked to radiology and a new neurologist. The head radiologist read new films with contrast and then found it positive. I called the neuro-radiologist myself and asked for a phone conference. The films were round-tabled and the neuro-rad agreed with me. Now, they are pushing for me to get in with a specialist sooner than the MS specialists say that they can get me in. Funny thing is, I went to the hospital several times and asked for the MRIs in the ER and to be admitted for an MRI. During five days of being at the hospital noone still ran any SSEPs, VEPs, or MRIs. They insisted on CTs, even though I explained the situation. I finally decided to leave. And now, after two more years, I was finally able to get new tests and a positive reading. It is a shame that noone before would listen.
One John Hopkins trained neurologist had actually put in the physician notes how I came back two visits in a row insisting that there was abnormality in the spinal cord. Now, two neuro-rads, the head rad., and my neurologist are in agreement. He states that my problems have been there since the first spinal MRI after the chemical exposures. It has been unbelievable.
Finally, the top neuro that I had been seeing since 2001 also stated that the multiple spinal lesions do not correspond to MS. The neuro dept has a lot of patient with similar spots on holes in the spinal cord but it is not important. And they had terrible headache and pain. But, it is unknown why. I thought, well if not MS, perhaps myelitis, ADEM, or another infectious or ischemic process, etc.
I thought that perhaps a correlative review of the charts and undiagnosed patients with such symptomology should be performed. As I walked out, the neuro then stated that maybe it could be MS; but they could only be sure with a LP. This is the neuro that would not do one years ago and then could not believe that I let the ER doc do one. After calling my neuro, the ER doc threw the spinal fluid tubes away without MS or lupus or India Ink or other infectious testing. I was sooo upset because the test was done without guided x-ray or anesthetic. I am glad that I finally have a seemingly more open-minded neuro, now.
Thought I would say, that the films should be read by a neuro-rad. The regular rads are usually more versed in looking for orthopedic or other disease problems. Without specific instructions and clinical patient symptoms/knowledge, especially to look for MS, etc., the spinal cord often is just not looked at in the same perspective in the readings when a structural defect is seen or believed to be present as is often the case, especially in older adults. I would insist upon a neuroradiologist review.
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