Symptoms don't match lesions?! So apparently I don't have MS?

[Pressed not Crushed]

I am frustrated and am seeking other MSers thoughts while I wait for my third opinion appointment.

I was Dxed with MS 6/11 after my legs decided they didn't want me to stand up very well for a few months and then my face went half numb for a week, 2 MRIs and a Spinal tap later I got my DX. I got a little better and did pretty well until 11/11 when I had a flare and started falling 2-3 times a day. I had 3 days IV steroids and got much better, better than I was pre- flare but still had/ have balance issues and other minor MS nuisances. Which was perfect because I had to move to the other side of the state. So at my post steroid appointment I asked if my Dr. had any referrals to the area I was moving to. He did so I set up my 6 month apt with her as soon as I made the move.

Somehow my spinal tap records seem to be lost in the wind and didn't make the move with me, nor did my MRI records at the time and the Dr sent for them again and ordered a new one too. Luckily there were no changes but she decided that I have too few lesions for all of my symptoms, so that I couldn't possibly have MS, and that was it. She didn't offer to try and figure out if something else was wrong or anything just decided I didn't have it and tried to send me away.

As far as the too many symptoms goes, part of me is like "no kidding, I have arthritis in my back too, and we are pretty sure I have fibromyalgia." but I don't think that dismisses the lesions entirely. She decided that I don't have MS because my lesions are small and could be caused by anything. And that may true, but once she yanked me off my DMD within 2 months I had another flare of falling again and started having bladder problems.

When I went back in she still insists I couldn't possibly have MS and sent me to a urologist. She did do a nerve conduction test and found that my left leg was "slightly off" (I can't remember how she put it exactly) but she said it wasn't a big deal. I wouldn't mind if I find out that I don't have MS but I feel like I am being dismissed. I have too many symptoms that arthritis and Fibromyalgia don't really explain like heat and cold sensitivity, MS hug, and numbness here and there for random periods of time.

I live in a small area with very few neurologist and she is the only "MS specialist" around. I am waiting for my third opinion appointment to see what side of the Dx he is on. My only worry is as far as MS patients go he usually refers to my current Dr.

So anyone else get the Dx revoked?

[Marco]

I've have been dx'd, undx'd, redx'd, downgraded dx and then I have MS again. It wasn't fun for me and it doesn't sound like it's been fun for you either. I am sorry for the doctor troubles you are having on top of your medical troubles.

Every time I have a MRI I get a copy on CD and a hard copy of the report for my own records. This is a good practice to have since medical charts are normally a nightmare for doctors. I actually bought an art presentation folder to protect the MRI films that I have.


I understand you are located where there are few neurologists. When considering any new location we always look at what medical treatment options are in any particular place. Because you have limitations I would not burn any bridges with your current neurologist until you find a better alternative.

I would consider scheduling another appointment with your current neurologist and ask her to compare your medical charts/tests/etc with the McDonald criteria. Have her review the criteria with you and see how she is scoring you.

It's hard trying to second guess doctors online, but here are a few thoughts based entirely on what you posted.

1. Too few lesions for symptoms?
As far as the number goes ... you generally need TWO objective clinical lesions to meet the criteria of MS. Coupled with your two relapses (6/11 and a few months later) there shouldn't be much further discussion provided the documentation is correct.

2.Lesions are too small and could be caused by anything?
Lesions caused by MS have particular characteristics that help isolate their cause. Dawson's fingers are probably the most well known lesions that suggest MS. On my MRI reports the summary describes specific lesions as being "typical for MS."


I am sorry you are in this situation and I hope you get the correct answers soon. At least, then you will know what you are fighting so you can plan accordingly. Take care and please continue to update us on your situation.

[tspaulding]

Have any MS Neuros you have seen ruled out other illnesses that mimic ms? I would ask this 3rd Neuro to rule out other things, and have u been tested for MG?

Good luck to you and I'm sorry it is taking a third neuro to help you.

RRMS, dx 95, on Gilenya

[mjan]

Yesss!! I can identify too and I am so sorry you are going through all this. When I heard you say you had a diagnosis of fibromyalgia..that sounded too familiar. The MS Hug is not always understood or even known by many doctors, but fibromyalgia is more familiar. Actually it needs a special exam to diagnose Fibromyalgia, some doctors skip such a test, yet give the diagnosis.

I remember, one primary doc made a diagnosis of Fibro without the test and gave me a RX. Then the MS doc did a a more thorough Fibro exam and stated I did, but did not offer any treatment for it.

Later it was discovered to be the MS hug. Again, not all docs understand or know what to do with such a symptom.

But realize that in my opinion, if a neuro is not treating mostly MS patients, and keeping up on research/testing etc, they may not be able to make a properly diagnosis. The McDonald criteria is what needed to help make such a diagnosis. Even the specialists know that MS can often present in many variable ways.

So, not all patients present their signs/symptoms exactly in the classic MS manner. It is something that needs to be monitored and observed over time.

I know it is difficult to be undiagnosed. But come here when you are frustrated anytime. We're here to walk this journey along side you, as we understand, we care and we'll support you along the way.

Keep us informed and let us know how you are doing.

Warmly, Jan

[MSW1963]

I'm not sure it's always possible to match sx's to lesion location. I think it's possible for every sx's to match as often as not to match lesion location.

It has been a pretty constistant problem with MS to 'match up' lesions with the variety of sx's. I have sx's on clinical exam of spinal cord lesions, but none on my MRIs. But my MS specialist knows the lesions are there based on my clinical exam over the years I've been a patient. I don't have routine Spinal cord MRIs, but my MS doc orders spinal MRIs when there's indication on clinical exam that things have changed/advanced.

Although there's been enormous progress in the last 20yr or so in MS advances and research, mapping the brain to the extent that every lesions is explained or matched up to each sx hasen't been mastered to that extent, at least not that I'm aware.

Without further explanation from the doc making that assertion, I'd personally have questions about qualifications, or suspect if it's 'double speak' for something other than MS that your doc suspects.

Best of luck and hope your recover soon.

[laurasari]

I would call the dr that diagnosed you and let him know what this dr did and I would check with your local ms society for a third opinion cause if she doesn't believe you have ms she should be looking to find what you do have. I learned the hard way find an ms specialist. Get your original dr to refer you if you need a referral. Good luck

[grammy2many]

Me too

I had the same thing happen to me. I experienced left-side weakness 15 years ago and was told possible MS based on my MRI. So I went every year to neurologist to repeat MRIs (spinal taps negative at that time) with drs. saying no new or increasing lesions, so no diagnosis and no meds.

Fast forward to 2011 when I had positive spinal tap and a few new lesions and a positive diagnosis. I can't help but feel that my progression of symptoms wouldn't have happened if I'd had meds earlier. Drs. just say it's "good news" if I've had it for 15 years and I'm still walking. Easy for them to say since I'm walking with difficulty and only short distances.

I had 3 IVSM treatments in 2011 with complications so I was changed to methotrexate. I'm now off that and awaiting Tectofidera (?sp) tx in a few months. Praying that improves symptoms.

Good luck in your quest for answers.
Sue