recently kind of diagnosed

[dougd35]

Hello, I'm a 35 year old male in the middle of a workup.

About two months ago I had slight vision problems, kind of like spotty vision. Went to the Dr. who sent me to have an MRI with contrast. My vision was back to normal by the time the results came back but was sent to the neurologist because of the MRI and Came to find I had two old lesions and one newer one that caused the vision problems.

Never had any other problems that resemble MS so it kind of seems strange that the neurologist is so quick to daignose me but he says with the lesions I have a good chance of having MS. He's sending me for blood tests and a LP this friday but wants to start treatment regardless of the lp results.

First off, the LP really scares me. What is the recovery time? If it cant rule anything out and he wants to start me on treatment regardless, is it necessary? Should I wait for the blood test results before getting the LP?

I have a lot of other questions that i did not think to ask the neurologist because after he told me I probably have MS, I just kind of went blank.

I am very active and work a pretty physical job so it seems to be a strong diagnosis for so few symptoms but I'm not in denial. I know my best chance is to get treatment early.

Thanks for reading and any advice would be appreciated.



** 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. **

[jazzgirl]

That would really **** me off! "Probably" MS? Commit much, doc?

I don't blame you for being confused. He needs to either be more specific with his diagnosis and tell you WHY he believes that what you have is MS, or step aside and let someone else do the job. Good luck to you!

[dougd35]

I think what he was saying is that if the bloodwork doesn't show anything to rule it out then I should start MS treatment. His exact words were "80% of people with multiple brain lesions go on to have MS. In the past they would wait for more symptoms but found that patients would almost always have relapses that would do damage that could have been avoided by treatment." I just notice on my paperwork it says MS- new diagnosis so, I guess I was diagnosed unless the bloodwork says different. Could there be anything else that can cause these brain lesions? I have too many questions. Anyway, thanks jazzgirl for the concern and good luck to you too.

[Faith708]

Hello dougd35,

I was diagnosed this summer and I was told almost the same thing by my doctor. I also have 3 lesions but went in initially for vision issues in one eye. I had an MRI and was told I have beginning signs of MS and I need to get started on meds asap. No prior symptoms that i ever noticed.

I believe lesions can be caused by serious head trauma as well but im not certain. I was also told that they couldnt tell how long they'd been there or what was old and what was new.

I felt like my diagnosis was very quick as well and yup when it came time for questions i think i checked out (of course not literally).

My vision issues lasted for about two months and I did a three day steroid therapy which I was told would speed up the process.

Its very overwhelming but it helped me to write down all my questions so that when the time came I could get as many out as possible.

Hope it all works out for you.



** 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. **

[MSW1963]

Hi dougd35, I had sx's beginning in my 20s', including multiple bouts of Optic Neuritis , Cognative problems that sometimes made communicating difficult because I struggled to find words, in addition to visual spacial problems, and bladder problems. Kind of unbelievable that these sx's could all be related, but that's the problem with MS.

My sx's went un-diagnoised for 20 years before I had an exacerbation from which I have not recovered. My brain MRIs revealed 20+ lesions and I was eventually diagnoised based on MRI, Optic Nerve damage and my med history, excluding all other possible medical explanations for my sx's.

I was athletic, loved my job and had recently adopted a daughter when I was dx'd.

I sometimes think that I have something other than MS too. I don't think that is uncommon for some people.

I hope you don't have MS. Get a 2nd opinion or 3rd until you find a doc or dx that makes sense to you.

[Bob698]

Doug, reread your first post.
Your Dr. wants you to start treatment now- for a very good reason. The goal is to keep your symtoms mild for as long as possible.
Many of us had to wait for a diagnosis, in my case it took ten years before I could start treatment. Knowing what I know now, I wish I could have those ten years back.

[Redwings]

Hi doug:
There are numerous conditions that can cause brain lesions. In some of those conditions, the brain lesions have a characteristic appearance. Some conditions have lesions whose appearance is nonspecific. MS is one of those conditions that often has lesions having a typical appearance. The appearance of brain lesions is factored together with other signs and symptoms -- and all other possible causes ruled out -- to ultimately arrive at a diagnosis of MS. There is currently no single test that is diagnostic for MS.

Optic neuritis is frequently the first (presenting) symptom of MS. Assuming that your visual episode was optic neuritis, there are statistics about what might be expected to follow. In people with an isolated episode of optic neuritis, those who don't have brain lesions (lesions reasonably attributable to MS) have a lower chance of developing definite MS. In people with an isolated episode of optic neuritis, those who do have brain lesions (lesions reasonably attributable to MS) have a higher chance of developing definite MS. That's one set of statistics your neurologist was likely relying on when deciding that you have MS.

Also, a single episode suggestive of an "attack" of MS, along with the presence of brain lesions, is called Clinically Isolated Syndrome (CIS). Under current diagnostic criteria for MS, two episodes of "attack" are required. CIS is sort of a "technicality" category wherein the disease looks like MS but there's been only one episode instead of the necessary two. This could be what your neurologist was referring to when he said that 80% of people with brain lesions go on to develop MS.

There is evidence that people who start on one of the MS treatment medications while still classified as CIS have a better physical outcome than people who don't start treatment at that stage. That's likely the second set of statistics your neurologist was relying on when deciding that you have MS and recommending that you start treatment.

The idea behind the LP is to look for chemical clues that, while not exclusive to MS, are typical (80 to 90% presence) of MS. That typical result, when combined with other findings that are typical of MS, helps to confirm a diagnosis. A positive result can be helpful in removing doubt about MS while still in the CIS stage, when there's less information available to confirm it.

Whether or not you have an LP depends on how anxious you are to do whatever's possible to confirm a diagnosis and give you confidence in your decision about whether to start an MS medication. The MS medications can have some unpleasant side effects. In spite of the evidence about early treatment, whether to start on a medication -- particularly when you aren't having any other problems -- is a very personal decision.

You don't have to have an LP. One of my neurologists explained it this way: If I wanted my doctor to figure out what was going on, I had to be willing to give her as much information as possible to do that. My case, though, was murkier than yours. If you -- and your doctor -- think that there's already enough information available to base a diagnosis on, you certainly don't have to have an LP.

An LP can also rule out other conditions, but they may very well be conditions that you aren't showing signs/symptoms of anyway. It sounds like the LP, in your case, is more for confirmation rather than rule-out.

The blood tests don't confirm or rule out MS, but look for other "mimic" conditions that share some signs and symptoms as MS. The blood tests are the component of a workup that identifies or rules out other conditions that might be causing your signs/symptoms. But the presence of other conditions doesn't necessarily rule out the concurrent presence of MS. If information is contradictory, it takes some pretty good diagnostic work to sort everything out. Clear as mud, right?

For your own peace of mind, you might benefit from getting a second opinion from a different neurologist, preferably one whose practice is limited to, or at least emphasizes, MS. (The National Multiple Sclerosis Society can give you some leads on MS-savvy doctors in your area.) You can get a second opinion without an LP, and the doctor will have to work with the information that's available. You can get a better idea about whether to have an LP based on what the second-opinion doc says about it.

Good luck on your journey, doug! Come back and ask questions when you need to.

[dougd35]

Thanks for all the replies, they are very helpful. I have no problems with taking the medication, just don't like the idea of the LP. I know they are pretty safe these days but don't like the idea of people messing with my spine. Is 2 days enough recovery time before going back to work? I work a pretty physically demanding job that can be rough on my back and only have the weekend to recover.

As some of you probably know, it stinks not having anybody to talk to about these things and even if I did, they would not likely be as knowledgable as people who have been through it so thank you all.

Thanks again,
Doug

[CaroleK]

Hi Doug:
I was diagnosed with MS in July after going through a battery of blood tests, several MRIs (on the brain and spine) and, finally, a lumbar puncture. To be honest, the actual LP itself wasn't too bad..a bit painful but nothing I hadn't already experienced giving birth and getting epidurals. It's uncomfortable and slightly painful, but, overall, really not that bad. What threw me for a loop was the spinal headache that I ended up getting from the LP. I really think that, had I allowed my body the proper rest post LP, I wouldn't have been so miserable but I didn't.

The headache is a strange one: the minute you lie down, it goes away but if you are sitting or standing up, it is like the worst migraine ever. Not everyone gets these though, so you may be lucky. Even if you do, make sure you take the time off that is needed to recover and rest rest rest! Also, load up on the caffeine...it helps increase the cerebrospinal fluid pressure which relieves the headache. I ended up going to the emergency room (day 4 after LP) because my head hurt so bad. They gave me a caffeine drip, which did help a bit. I must stress though that I was doing way too much too soon and didn't allow my body to recover. They say that only about 30% of people get these headaches, so I'm hoping, if you do get the LP, you will be in that 70%! My neurologist performed one to rule out any other diagnosis. Take care, Carole

[dougd35]

Thanks carole. I was planning 2 days of rest but if it takes more, I'll get them to write me an excuse and work will have to deal with it. It's a bad weekend to have this done because I'm from pittsburgh and we work night shift on sundays and there's a big steelers game on sunday night so we are short staffed at work. If not for that, I'd have taken sunday off too. My job requires constant lifting so I'm worried about going back too early and I don't really want to hold off on the LP because if the best course is to start treatment, then I want to get started. Thanks again, you eased my mind a good bit.

Doug

[KyleW]

Your initial neuro appointment went a lot like mine. She looked at my brain MRI and blood work, ordered c-spine MRI and more blood work. She said 85% of people with my symptoms/blood work/MRI went on to have MS.

She sent me to an MS specialist who did an LP, which confirmed the diagnosis.

The LP itself was no big deal for me. I know that many have issues afterward, like headache. I lay on the table for 30 minutes, following a 15 minute procedure, and got up and walked out. No issues of any variety ever, related to the LP.

[dougd35]

Thanks KyleW. After reading some posts on this site and asking questions, I think I'm just worried about putting strain on my back at work but I'll have 2 days to recover and I'll just take it as easy as I can when I go back. If I feel I shouldn't work, I won't. If you don't mind me asking, are you on medications or have you had any other problems?

Thanks again,

Doug

[empirerecs]

Hi Doug-

I was very nervous about the LP but the procedure was actually pretty painless, just pressure. I took an anti anxiety prior because I have a fear of needles and that helped.

My neuro said give it 5 days on my stomach. After day 3 I had the most excrutiating headache, called the doc immediately and he said the puncture didn't clot and to go back to the hospital immediately. They drew blood, found the hole, dropped the blood into in and the headache was gone in less than 30 seconds! I had a great group of anesthesiologist. They made me laugh the whole time.

Not clotting is rare according to the docs, but if you do experience a headache that bad it's a quick fix. I honestly suggest you wait more than 2 days if you have a physical job, it's hard to actually take it easy once you are back at work. I don't want to scare you and a lot of posters were back up after 2 days but if you are nervous and can take a couple extra days then mentally it might help you.

Good luck and it will be fine. Also, I was dx with a few lesions in my brain and a numb shin. I saw a different neuro and he did a cervical MRI and I had a bunch of lesions. I started Betaseron immediately after that MRI and the positive LP. Once I finally went to the PCP my dx was pretty quick, but the first neuro didn't do the cervical MRI or the LP and was not going to give me meds because he didn't think the few lesions in my brain warranted them. Had I not gotten a 2nd opinion at the extreme urging of my friend with MS the cervical lesions would not have been found and the LP would not have been done.

[KyleW]

As far as medications go, today is the big day! I had an assessment visit with my MS Guru last month and today is the management plan appointment. The plan will include DMD but I don't know which one.

My symptoms were largely confined to my relapse in July. 5 days of IV steroids handled them pretty quickly.

[dougd35]

Thanks guys. At first I thought my neuro was to quick to start me on treatment but now I realize I'm probably lucky he's willing to do this work up. They told me at the hospital I will be fine to work sunday but I'll make that decision on Sunday.