Do I really have MS?

[0485c10]

Before I get a second opinion, should I at least ask her straight out, what is the basis for your diagnosis? Perhaps she will tell me something that will satisfy me. I do know when she was telling me about the various lesions, I responded with a silly remark like 'all these latin words are just greek to me'. She said something like, don't worry, you don't need to understand them, but I do. Maybe, it was when she was attempting to describe these lesions, I could have got the explanation as to why it is MS. I think I was slightly in shock and denial at the time, and I perhaps didn't grasp all that was being said.

I am a HUGE supporter of medical treatment in the 22 century obviously...HUGE..HUGE. I feel like donald trump liking that word all of the sudden HUGE, just HUGE!!!

docs are people they understand the shock and confusion happening during an appointment. it's why its often recommended to bring someone with you to an appointment so you have 2 sets of ears to listen and remember what was said....

which advise sucks for the single person. the world was designed for couples unfortunately just try to purchase a travel package as a single person...you'll see what i mean.

doc's also don't mind if someone brings a tape recorder into the appointment and tell the doc(before recording) they would like to tape what is discussed in the appointment so they can think about what was said afterwards....

neuros who deal with patients with neurological issues that affect cognition & memory are the most understandable.

Make a plan to do that & give it a try at your next appointment when discussing diagnosis & treatment option...you'll impress her as a nononse can-do type of person.

you can google what terms you don't understand during the appointment afterwards--maybe come back to a support board to ask what was said that you didn't understand.

[Arthur Spooner]

Wow!

0485c10, Your last three posts to me, they blew me away!

Putting aside the considerable substance of what you wrote for a moment, the effort was amazing. Not only the time you spent getting this information to me, but the way you remembered even small details about what I had said.

Please believe me when I tell you I am truly grateful for your kindness, wanting to help a total stranger like me.

I will take a recorder into my next meeting (wont be till after christmas). One of my sisters offered to go with me, but I am a kind of private person, and if I am going to hear bad news then I would like to digest if first on my own. It would be different if I was still married. I will also make sure I come prepared to the appointment with questions that I want answered written down.

I do have a printer that I use with wifi and my ipad. I think the ipad is the best investment I have ever made. Being able to lye down in a comfortable position using the ipad allows me to stay up with the world. Also bought a bluetooth keyboard to go with it, so if I want to write a decent length email like this, I do not have to do it with two fingers.

I will have spend sometime on your homepage educating myself.

Thanks again, your effort meant a lot to me.

[Chicken Mama]

I'm scratching my head here...in my experience, getting a second opinion before undergoing surgery or beginning an aggressive drug regimen has always been sound advice. Of course we'd all like to hear that the initial, dire diagnosis was in error - who wouldn't? But more than that, it's important to know with confidence that the initial diagnosis was accurate! I've read many MRI reports that were negative, and then reviewed the images and agreed with absolute confidence...only to subsequently learn that the patient had undergone surgery anyway!

Everything I've read says that a lumbar puncture is a valuable tool in making the difficult MS diagnosis. If I was being worked up for MS and a neurologist told me that the LP wasn't necessary, I'm sure I would seek another opinion to confirm the diagnosis before proceeding.

In short, I think using the term "doc shopping" here is off-base.


rex

I just wanted to throw out my experiences here as food for thought:

Doc was so sure he thought I had MS after first visit 'signs' and symptoms that he ordered an MRI and asked me to bring a 'support person' with me to the next visit.

MRI was abnormal with 15-20 lesions on my brain, but not typical size and shape for MS...none on spine.

Referred to Opthamologist to check out blurriness in one eye...it's not optic neuritis, maybe the beginning of a cataract.

I had a spinal tap at the next visit. It was done in the office there and it was a piece of cake. I sat on the table with my legs facing the wall curled over with my head resting against the wall. Didn't take long at all...the first two numbing shots stung a little, the actual 'big needle' I didn't feel at all. I had to go elsewhere to get the comparative blood drawn because of my insurance, and rested when I got home. I didn't get the headache.

The spinal tap showed NO markers for MS, when everything else had seemed so positively to be pointing to MS.

He said it was probably a one-time thing caused by infection or virus ( or mild encephylitis - inflammation of the brain). From looking around online I think it is ADEM - another demyelinating disease, but not progressive.

I go in 6 months for another MRI to check the status of the lesions and make sure there are no more.

...so take from that what you can. It is just another person's experience to add to the mix.

For me, the spinal tap was not the horror that some people have had. I am not over-weight, so maybe that made a difference.

From what I understand, MS is a very difficult disease to diagnose. As my Doc said, it gets really messy to diagnose, re-diagnose, un-diagnose, etc.

There are both good doctors and not-so-great doctors out there. If you don't feel comfortable or confident with your doctor, definitely get a second opinion. It's a different story if you feel confident in the doctor, but just don't like the diagnosis or are in denial.

Just my two cents and experiences. I hope it sheds some light for someone. Hope you feel better soon, and get some resolution soon, AS.

[owlnona]

Hi Spooner, Welcome to MS World, I would get a 2nd.opion on that drug,as my neuro will not perscribe it eather.
I'm on Rebif & have been for 11yrs,It works for me.
keep us posted God Bless, Merry Christmas.

[jenphilly]

David -

I am at the beginning of the MS road right with you! Just last week I made my decision about what treatment to start with. I was interested in Gilenya, but after talking with a neurologist who was has been involved with the trials for the last almost 6 years, she said if I was her sister she would not let me take Gilenya. She has been involved with Gilenya thru the trials and the longterm effects are only now starting to be documented. In her practice she is seeing unusual cancers from patients that have been on Gilenya for more then 2 years (again, she was one of the doctors involved with the original Novartis human protocol studies). She still uses Gilenya with patients, but she is modifying her treatment plan to limit how long a patient stays on it. As she put it, she uses it as the 'big guns', compared it to chemo, for short term, extremely effective, but not a longterm option. But, with that said, it's her opinion only, but from she anticipates more trials / testing to be ordered by the FDA due to the growing concerns.

Anyway... babble... as for the LP. I was beyond terrified of having the LP done. But, as it turns out, it was a key in my diagnosis. My run down of diagnosis over 6 months went....

pinched nerve
MS
arthritis in the lower back and bulging disc
MS
Fibromalygia (spelling there...
MS
Lupus
MS
definitely CNS lyme, oh no wait...
MS confirmed by LP

My brain MRI came back almost clean, have 2 tiny lesions which were indicative of lyme or migraines. Then bloodwork showed I've been exposed to lyme (we have horses, so no shocker there....). But, the infectiuous disease doc kept saying that the presentation was too involved for lyme and if this was all lyme, he said it was medical journal worthy. He literally had to beg me to have the LP done. They decided to move forward with lyme, guess the neuro was just hoping it was the final answer. Right before the LP, my C and T spine MRIs came back showing quite a few and larger lesions indicative of MS. Armed with this, the infectious disease doc really believed there had to be something other then 'just' lyme. I agreed to the LP when I had the picc line implant done for lyme rocephin treatment. As it turns out, I'm lyme free, but have all the markers for MS, the LP confirmed the bouncing diagnosis to truly be MS.

One thing I would tell anyone needing to have an LP, is to demand it be done under fluoroscope. It literally is visual aided puncture, so the neuro / doc doing the stick can place the needle directly into a the opening between your vertebrae. They did a local numb and it's really more stressful then anything else. The worst part is the after, I had discomfort from the loss of fluid in the spine, but that was nothing major, resolved in maybe a day. It was a price to pay for having the information gained.

Have they ruled out anything or just jump to MS diagnosis? With me, it seemed, no one was willing to sign on the dotted line that it was MS, we had the oppositive frustration of why can't they just figure out what is going on, how many more tests, visits, specialisits...

In Australia, is lyme common? Literally CNS lyme presents clinically like MS, every symptom could be explained by lyme, but the severity of the lesions in the spine were a big flag (apparently lyme likes brain). It's one of the things that my doctors agressively had to rule out or chase down before they came to the MS wall...

Someone else noted that MS is more a matter of elimination. Others here have way more experience then me, I'm a newbie, but in 6 months of reading / educating myself, the one thing that is clear over and over is that diagnosing MS means ruling out everything else. I'm not happy to end up with an MS diagnosis, but I can accept and jump into what I need to do to deal with this twist in life because I have no doubts we've run down everything else it can be and unfortunately we keep ending up at the MS roadblock.

One thing I have to admit to doing, was going to see a new doctor and NOT sharing what another doctor had to say... Gave the new doc all the tests, but not the doctor's notes. I wanted to have entirely fresh eyes / thinking look at things. Still ended up at MS, but again, I have no worries that we're not moving in the right direction...

That's my babble... the point... don't be afraid to challenge your doctor(s), don't worry about their medical training is if your gut is telling you that you doubt. It's your body, health and life... you're the one that has to live with treatment and you have every right to challenge what any doctor tells you.

On a personal note... reconsider letting your sister go with you. I know it was helpful for my husband to be with me, was great when my mind started going a thousand miles a minute, he knew questions I had and would jump in with things I forgot. And it sounds like she has experience with MS, she might think of questions that never crossed your mind. One thing I have learned in this so far short journey in MS, it's not something you can easily do on your own...

Wishing you the best!

Jen

[0485c10]

Hi Spooner, Welcome to MS World, I would get a 2nd.opion on that drug,as my neuro will not perscribe it eather.
I'm on Rebif & have been for 11yrs,It works for me.
keep us posted God Bless, Merry Christmas.

Why does every run one straight to another doc before communicating with the one they have??? something is wrong with that. but i agree with you owlnona i would be uncomfortable starting with Gilenia...my actions would be different from yours though...i would communicate with the doc i had. i'm uncertain why everyone thinks their doc won't listen, is open to only their own ideas. with so little evidence that is the case...convicted without a trial?

[0485c10]

Considering the poster has been monitored for 4 years by a two neurolgists--1. a PROFESSOR of Neurology at a respected major hospital and 2 a specialist in MS at the same respected major hospital.

I find he is at a different and more complex level then the simple advice given in the most recent posts--more he has to understand what is going on. He's at a top level for 2nd opinions already!!

Unless that professor in neurology & MS Specialist haven't thought of all the possibility that the rest of you have. Maybe it didn't occur to them?

[cosake]

First of all, welcome to the boards ! Sorry you have to be here, but it's a great place for support.

With regards to your doctor, I agree that you should meet/talk with her again to clarify her diagnosis process. Make a list of questions/concerns and take it with you.

The neuro I met with initially recommended to me that I get a second opinion at the end of my consultation. I hadn't even thought of it myself, but this was only an hour after the eye doctor mentioned MS to me and I was not in a good frame of mind. So, if your neuro does not convince you of the diagnosis, definitely seek out a second opinion. Be sure to take a list of questions/concerns with you. You will never remember everything you want to ask once you get there.

With regards to LP, it is not necessary in order to obtain a diagnosis, but could be helpful or give additional positive proof. I had one but the neuro told me ahead of time that it might not show anything and the choice to have one was mine. Some people with MS diagnosis have clear LP results. I, however, had the O-bands and that was what convinced me to start a DMD.

With regards to DMDs, I too would question the choice of Gilenya as the first recommendation. I am in the process of trying to get on Gilenya myself, but I have tried two other DMDs with severe side effects. I am particularly sensitive to meds, so I'm not sure if the Gilenya will be any better for me but I'm going to try it. I have done some research and found out that there are some people who have been on Gilenya for up to 5 years total with all of the trials, etc. So I feel better that this isn't something that is just 1 year old, but I wouldn't make it my first choice. Like everything else, there is a risk. You have to decide how much of a risk you want to take. I've actually considered taking no DMD at all but worry about the future.

Good luck with your neuro and I hope you get some firm answers.

[CasinoKathy]

First-- a BIG WELCOME to MSWorld! Reading over all the responses you have gotten, they are very informative.

I'm gonna lighten this up a bit (he-he) ..........

So you like sitcoms--me too! "Arthur Spooner" wasn't he the father of Carrie on "King of Queens"? I still watch that on TV Land in the evenings- last night as a matter of fact. Jerry Stiller was a hoot on that show. Doesn't he still make movies and appearances on some shows? Also like to watch the movies his son "Ben" makes. Ann I enjoy Anne Meara, Jerrys wife and Bens mother. The entire family is very talented!!!!

Good luck to you with your medical treatment-keep up and don't "give up or in".

[Arthur Spooner]

Hi CasinoKathy,

King of Queens was a classic. Jerry Stillers wife also appeared on the show playing Spence's Mum, and actually marries Arthur on the final episode. There daughter appeared in heaps of episodes playing bit parts, and I think Ben was also in one ep.

My other favorite sitcoms are Frasier, Seinfeld and Everyone loves Raymond. I know they are a bit dated now, but each night my son and I will will get out a box set and watch a couple of episodes before calling it a night. We have watched them all too many times and are desperately looking for something recent. Big bang theory is ok in small doses, and two and a half men does not make for family viewing. We loved the English sitcom The IT Crowd but that was too short.

So many important decisions.

[Strhuntrss]

Possible MS?

Hello all,
I have been on this site before. My dr gave me the let's wait and see diagnosis. My new symptom is a burning and tingling sensation near the middle of my spine. It started about a month ago. Feels like someone has a TENS unit on my back.

I see my PCP tomorrow and my Neuro who has experience with MS on Jan 23. I saw him back in August. I'm concerned my mind is not getting any better. I forget things too easily and I can't concentrate on a conversation to remember what someone just told me. This is getting bad enough that my husband wants to know what is going on. He just thought I wasn't paying attention. My words get garbled at times. Thought my mind was going faster than my mouth, if you can believe that, lol. The tingling in my legs is getting worse. Thought it might be RLS. It used to be on and off again, but now it is constant. Can't sleep. I already have the effects of ON. Colors are affected especially red. Headlights are piercing and when it is cloudy out my driving is compromised a little because of this constant shadow in the middle of my right eye. I hate it when rain is added to the mix. My peripheral vision is broken up. The lines on the side of the road are not solid. Dr (Opth/Neuro) stated this could be permanent. I have had this condition since Apr-2011. Should I be concerned with this new symptom? Thanks

[CasinoKathy]

Hey Arthur, I mean David

I also enjoy watching Seinfeld and Everyone Loves Raymond- they are on here starting about 9 PM most nights. I haven't seen the old Frasiers in awhile, always liked that one too.

One of the new shows this past fall that we enjoy is "Last Man Standing" with Tim Allen. If you liked him in Home Inprovement you would probably like this one too.

I remember Anne Meara playing Spences mom, but didn't know her daughter had been in the show off and on. And I'm not sure if I remember Ben. But I do remember the ending where Anne and Jerry marry.

I love watching comedies- need to laugh often as this disease can really bring a person down sometimes.

Wishing you good luck finding finding an answer to your symptoms. I went along time thinking "why can't I be "normal" like other people. Sometimes it takes years for the docs to get it right. Casino

[Arthur Spooner]

Hi Casino,

Amy Stiller was in seven episodes playing different roles. Most notable was when she managed a cafe and Arthur demanded to be made customer of the month, even though he was too cheap to ever spend any money there. I am not saying that my son and I are King of Queen addicts, but last December we went on a holiday to New York and made a point of making sure we went over the Queensboro Bridge. I have heard that you can get downloads for your ipod so that you can do a walking tour of parts of Manhattan voiced by Jerry Stiller. We didn't do it, but would of if we found where. We did do the Kenny Kramer reality tour, which is the real Kramers tour of New York. Yes, I know, I have to get a real life.

I have heard of 'Last Man Standing", but it hasn't yet been shown on Aussie tv, unless it is on cable which I don't have. I could always download an episode, which is sort of naughty, but not if you have your fingers crossed when you do it!

I am very lucky so far and have not really felt the effects of ms, unlike most brave people here. I don't know how I will react when they begin to impede on my life. I am sure though, that a sense of humor is something I want to be able to hold onto more than most things. Lets face it, life is a bit absurd, and most things should be laughed at.

i am not down to see the MS neuro until Jan 18th when I will pick her brain with all my questions. I can't see any reason why she would not want to help me feel comfortable with her diagnosis, or treatment. I just want her to sell me on it.

[helen_908]

difficult question

I was diagnosed 20 years ago with an mri and lumbar puncture. I had had numbness in both hands and from my bra line down to my feet that lasted about four weeks.

When I saw a neuro he ordered the mri and lumbar puncture and diagnosed immediately...I was shocked but also relieved to know what it was.

Sounds like you have none of the tell telling signs of ms apart from the lesions showing up in your mri. I have only the last year had another mri and there is a big difference as far what the mri can now show after all the technical improvements with the machine.

I am also in melbourne, i would suggest you see another neuro, get your gp to give you another referral to someone else. I would prefer a lumber puncture over an mri any day...

and as far as gilenya there seems to be a lot of negative comments from the people that replied to you....there are a lot of positive comments on other pages....I am on gilenya now for three weeks and I have no problems. I was on avonex for ten years and no problems with that either but liked the sound of gilenya reversing the lesions and side effects....avonex was new ten years ago and now gilenya is new....

I have no one in my family with ms just a lot of parkinson....

I hope some of what i've written is of some help....


** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[CasinoKathy]

Hi Arthur, been reading over your initial thread here, and just so you know- there are never any silly questions! I have read that some people have been dx with a positive MRI and Lumbar P, and some with just one or the other. As soon as I was dx my neuro and I both agreed that I would start on a DMD as soon as possible, to help keep the progression as far away as could be. Since I had sx off and on for the previous 13 years, I am too much of a chicken to go without any drugs that could maybe keep me out of a w/c. I am still walking, with a cane, don't walk very well, but I can ride a mean Harley just fine!!!

Watched some Raymonds and King of Queens tonight, and boy those shows sure keep me laughing. We all need to keep a good sense of humor when dealing with these health issues!! YEE-HAA!!