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Avatar universal

I fired the MS Specialist who believes my ON and lesions are from migraines. I really need advice!

I've read over and over that ON and brain lesions are no way related to migraines, and if you have lesions on your brain, and suddenly get ON, almost 99% of the time, it's MS. Please correct me if I'm wrong!

He orders another VEP and an MRI as soon as I told him of my eye pain and dilated pupil that's been getting bigger. I dont have the results from the VER yet, but the MRI specifically says I have a mild case of ON. The pain was so bad the other day, that I'd really hate to have a SEVERE case of it. Good Lord! Lucky for me, I still have my vision, so I feel very blessed, but very scared what could happen next.

When he ordered the MRI, he faxed it to the hosp, and when I went to get the results, I read that he wrote to rule out migraine and migraine aura on the paper. I now have 3 radiologists who believe I had MS and now ON, and no doctor to treat me.

I called and yelled at his medical assistant today, and said I should be getting treated for MS, and that I do NOT have migraines. I told her that I picked up the MRI report and told her the knowledge I had, and asked her to please talk to the doctor.

She gets back to me in an hour after talking to the doctor, and he said that he wont give me potentially hazardous drugs for someone with just migraines. I told her to cancel all my appts, and I'll be sure to write review about him online. With 3 radiologists, this is pretty rotten! He also told me that he would never believe one of the radiologists when I went for my 1st appt,  and that tells me they probably had it out at one point or another.

He wanted to do a sleep study EEG, to check things out, and an EMG because he thinks I have carpel tunnel, and that's the reason my hands keep going numb. But he basically says that all my symptoms are related to depression or anxiety.

On and off numb patches on right leg, on and off HOT hands, daily headaches (NOT MIGRAINES!), muscle atrophy in both legs, severe muscular pain, chronic fatigue, short term memory loss, stuttering, gait problems, falling, etc, etc.

What the heck do I do now???

15 Responses
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Avatar universal
I found this written by Dr. Joseph Parisi, an ophalmologist from my area. It's about ON and MS.

Optic neuritis affects predominantly women between the ages of 15 and 45. It is characterized by unilateral acute or subacute visual loss, often associated with retrobulbar pain or pain with eye movement. Generally, there is also diminished brightness sensitivity, decreased color saturation and a central or paracentral scotoma in the affected eye.

Other types of field loss can also occur including arcuate and altitudinal patterns. There is almost invariably an afferent pupillary defect acutely. In two thirds of patients the inflammation is retrobulbar and the optic disc appears normal (‘the patient sees nothing and the doctor sees nothing’). In the remaining third the inflammatory process is anterior and optic nerve swelling (papillitis) is evident on fundus examination.

Vision typically worsens over the first week and then recovers gradually over several months. Initial acuity ranges from 20/20 to no light percetion. Seventy-one percent recover to 20/20 and 95% to 20/40 without treatment within 1 year. Despite this many patients experience residual abnormalities in brightness sense, color vision, pupillary reactivity, contrast sensitivity, optic disc appearance, and visual evoked potentials. Uhthoff’s phenomenon (transient decrease in vision with exercise or elevation of body temperature) occurs in one half of patients after recovery.

The diagnosis is based on clinical findings and patient history with emphasis on recent viral illnesses, neurologic dysfunction, and family history of multiple sclerosis. Neuroimaging can be done in atypical cases (fat suppressed gadolinium-enhanced MRI). This may show focal areas of enhancement in white matter tracts including the optic nerve (Fig.5) indicative of demyelination.

Optic neuritis in children differs from that in adults. It is frequently bilateral and usually postviral and may be associated with meningoencephalitis.

The association of optic neuritis with multiple sclerosis (MS) has become more clearly defined in recent years. Long term studies have shown that over decades the risk of an optic neuritis patient developing MS is greater than 60%. The risk may be greater in women and with occurrence at a younger age. Most MS patients have evidence of optic nerve disease, although only 55% have had a clear history of optic neuritis. MRI abnormalities in the brain are found in about half of patients with clinically isolated optic neuritis. Many do not have neurologic signs or symptoms.

The Optic Neuritis Treatment Trial which ended in 1991 showed that treatment with oral prednisone to be of no benefit in typical cases of optic neuritis and may even predispose patients to further attacks. High dose intravenous methylprednisilone with subsequent oral steroids led to a slightly faster visual recovery but did not change the final visual acuity compared with placebo and did not affect the rate of development of MS over a 3 year period. The decision to use steroids must be made after careful assessment of their otential risks and benefits.

Cass
Limbolander
Helpful - 0
1070610 tn?1279274410
Glad you saw Nickies post Quix.  I wanted to bump it up for her .

Reading it again this morning I hope the LOL sounded like it was intended.......to laugh along with you Nickie as ...been there done that...in regards to the putting of words in the wrong order etc and bumping you up at the same time.

Been feeling blue lately so your post made me smile.

Mistylee
Helpful - 0
147426 tn?1317265632
Of course I understood what you meant, NOW as opposed to my earlier comment/assessment.  No need here to get flustered and worry that you were being demanding.  It was pretty obvious that you felt you had inadvertently sounded imperious.

No worries.  I'll look it all over later and see if anything has changed.

Quix
Helpful - 0
1070610 tn?1279274410
lol!!
Helpful - 0
Avatar universal
I hope you understood that "NOW". I wasnt asking if you could do it now. I was just wondering if there was a change in your opinion now. LOL! Er, after posting that and in caps, and rereading, boy did that sound pushy. I didnt put my words where I wanted them! I hate that!
Helpful - 0
Avatar universal
Hey, thanks for stopping by, Quix, and it's good to see you again! It's seems all I've been doing is running from Neuros for the last several years, but like I said, I'm not giving up yet, even though this suker brought me to tears on my knees!

I'm a little confused about T2 hyperintense lesions since I'm still learning, but if you can find the time, I would love for you to re-read this and tell me your thoughts about it NOW if there's been any change of opinion, since you really seem to know your stuff when it comes to MS and MRI's....

http://www.medhelp.org/posts/Multiple-Sclerosis/Neuro-thinks-my-juxtacortical-lesions-are-from-migraines-and-my-symptoms-are-from-depression-/show/1136818 (1st Neuro who told me it was migraines.)

The latest MRI before ON from Feb. 2010:

Findings: Numerous small foci of white matter signal abnormality scattered throughout supratentorial brain parenchyma all measuring less than 5 mm in greatest dimension did not appear significantly changed when compared to previous examination.

There is, however, new faint enhancement associated with a small lesion in the subcortical white matter of the medial left parietal lobe best seen on axial image 18 of series 11. No other enhancing lesions are identified and no lesions demonstrate abnormal signal on diffusion imagining.  Lesions are primarily located in peripheral juxtacortical white matter, however, there are few tiny lesions in the periventricular white matter specifically adjacent to the atrium of the left lateral ventricle.

Impression: No significant change in the size, intensity, or number of multiple small foci of predominately subcortical white matter signal abnormality. There is, however, abnormal enhancement associated with a small lesion in the subcortical medial left parietal lobe compatible with active demyelination.

I would love for it to be migraines, but my gut tells me it's not. In addition, I do know what a migraine feels like (not trying to be a smarty pants or anything, lol), and I don't think having them once a month or every other month before my period would cause all these lesions, do you? Thank God for no more periods and that endometrial ablation. :)

Oh, and btw, do you have any links I can read about the migraines and lesions? I would really appreciate it. Until then, I'll be running a search on Google to find any info on it to read. I went to google images the other day and typed in migraine lesions and really didn't find much.

Thanks for any help!
Helpful - 0
147426 tn?1317265632
Beware of the doctor that that three diagnoses to explain all that you have.

Your lesions are from migraines.

Your hand symptoms are from carpal tunnel.

All the rest of your problems are from anxiety and stress.

This is a doctor with mediocre mind who hasn't put two rational thoughts together in a long time.  The most elegant medical thinking attempts to explain all problems and test results with a single diagnosis.   Any doctor that throws out multiple diagnoses when one will answer the problems has his own problems and you don't need to be one of them.

Run.  Run fast!

Q
Helpful - 0
147426 tn?1317265632
I agree that your neuro was a dufus, but be very clear that migraines are a MAJOR cause of brain, T2 hyperintense lesions.  They are not a cause of ON!!

This cannoection between migraines and lesions is one of the things that slows down the diagnosis if the person does have migraines or if the neuro is fixated on migraines as the answer for everything.

Quix
Helpful - 0
Avatar universal
Thank you, kindly, wobbly, and will do!

mayperl, nope, not taking any poo here! Even if a little bit gets thrown my way, feel sorry for the person who did it, who's gonna get it back 10 times worse! :)

I always write down my questions and symptoms before I get to my appts so I don't forget anything, but it doesn't seem to matter....I'm always rushed, which leads me to stutter more than I already do. I look forward to the day where I can speak to a Neuro or any other specialist who actually shows concern. My family doctor is the best! I really got lucky there! Now all I need is a Neuro like her, and I'm all set! Not ready to give up yet! :)




Helpful - 0
1116556 tn?1345115906
Twopack:  I've been going to the neuro's office all last week and today for Solu-Medrol infusions.  I used that visit as an opportunity to ask if the Dr. had a chance to review my write-up on what needs corrected, but conveniently, he is on vacation... so I will call back at the end of this week to be sure he knows I want it done.

Nickie: Definitely take no poo ;) I've learned to think about all my questions before an appointment since they seem to be in such a hurry, and then request copies of reports to be sure its recorded accurately.  Just like you said, "too many doctors, too many mistakes..." this is true.
Helpful - 0
293157 tn?1285873439
Hi there, just wanted to add that I certainly would get another opinion on that.. take care and let us know how things go

wobbly
dx
Helpful - 0
Avatar universal
Thank so much for stopping in with your opinions and advice. I feel like I just got a great big group hug! And even though I thought I was right, I guess I just needed to hear that someONE agreed with me.

I apologize for my typos in the beginning post. You can't "had MS". LOL! I obviously didn't proofread very well and was very upset when I wrote it.

All other diseases have been ruled out. Now with ON as well as an active lesion, tons of subcortical lesions, I have no doubts. Absolutely none. I wish I could have the docs emails to link this entire thread.. LOL!

Mayperl, you sound so much like me. Take no poo and tell it like it is! I get all my test results and wouldn't have it any other way. Too many doctors, and too many mistakes...

Helpful - 0
279234 tn?1363105249
I don't blame you for firing him. I would have done the same thing. It doesn't sound like you would have gotten anywhere with him, and it was a big waste of your time. By the way it sounds, he needs to brush up on his MS studying because, he wouldn't know MS if it hit him in the face.

No where have I read, that migraines are related to, or the cause of ON. I have read that other diseases can cause ON, or it can occur on it's own. But it does bring certain diseases into play, when there are brain lesions and you have ON...MS being one of the top contenders, not migraines. You are completely right on this! GEESH! Where did he get his degree? Out of a cereal box?

And not only did you get the famous migraine diagnosis, he wants to clinch it with depression or anxiety, so that if something can't be explained by migraines, then it must be your depression or anxiety. Is it warm enough for a bon fire yet? This neuro needs to be roasted!

I'm glad you ran, as fast as your feet could take you. I'm sorry that this is happening to you, and I wish there could be something I could do. It's happened to me, several times, and I know the shock is unbearable. All we limbolanders want, is a diagnosis, and some medicine, and that's not too much to ask.

The only advice I can give is, to try to find another doctor, one that will listen and put the pieces together. If you feel the need, take some time off from your search, to give you a little break, but don't take one that's too long. I know that this part should be easy...it's suppose to be. We should just be able to go to the doctors, and they be able to figure this all out. It's not fair when the evidence is pointing in one direction, but the doctor is blind to it.

Hang in there, and we are all here for you if you need us. Keep trying until someone does listen. You'll find the right neuro..he just wasn't the right one.

Helpful - 0
1045086 tn?1332126422
Maypearl, you go girl!!  You are an excellent self advocate and offered sound advice here.  I just don't understand what's up with the neurology physician community.  They push their patients to the edge and then justify psychiatric diagnoses when we respond with anger or tears or even resignation.

And what's the fascination with migraines these days?  Is it the new 'fad' catch-all diagnosis?  Nobody WANTS to hear they have MS.  We do want to know seriously if we can focus on treatment or need to reorganize our lifestyle.

"I recently had to request my Dr. to make changes to the new patient summary as he had recorded my symptoms incorrectly!"  OH MY, I would LOVE to hear the response you got to that!

Niekie72, that firing was certainly in order.  I hope you can find a doctor soon who will really listen to you.  Definitely keep on trying.  It seems several people here have had better responses from a neuro-ophthalmologist.  Any chance you can find one of those near you?

Mary
Helpful - 0
1116556 tn?1345115906
omg, sorry to hear this, Nickie.  My first reaction would be the same as yours; getting rid of the Dr. that dismisses my symptoms.

When I was first diagnosed, I believed the Neuro... but I also wanted a second opinion - just to be sure! And so I did... and so he agreed with the previous Neuro.

However, this second opinion Dr. was very dismissive of my symptoms that I explained because he said we caught this early enough where I won't experience anything that would effect my quality of life. Oh yeah? So tell me how headaches, burning pain in my arms and legs, stabs behind my eyes and random areas of my head, dizziness, etc... is NOT effecting my quality of life. Please... tell me.

Idiot.

So, I switched specialists again.  This time, I got in to see a neuro who ordered the Visual and Audio EP tests, lumbar puncture, and a full brain/neck/spinal MRI.  All of these tests (luckily for me) were abnormal; confirming my complains of pain in arms, legs, and hips that the other Dr. dismissed.  They found the onceological (sp) bands at the c5 and c6 level which work your arms, fingers, and legs.

Finally.  I have a Dr. that took the extra time to complete more thorough testing in an effort to FIGURE OUT why I'm experiencing pain at times of an attack.

It wasn't easy. It took me about 2 weeks of going through a list of Dr.s on my health insurance website for in network neuros.  I called each one asking first, if they specialized in MS. Then, if they were accepting new patients. Then, how busy the Dr.s schedule was because I NEED and WANT someone who has time for me...

I know this is frustrating for you.  It may take some time before you find a Dr. that actually cares, but go slow. Spend some time calling around, and make a list of questions important to you before you call.  Treat this like a mini interview for who will be "contracted" as your chosen specialist.

Best of luck, and remember to take it slow. Don't stress out, things will fall in place.  Make sure you request copies of your FULL patient record/s including test results.  I recently had to request my Dr. to make changes to the new patient summary as he had recorded my symptoms incorrectly!  The best Dr. is yourself. We have to manage these people to do what we need.  I wish we could depend on them to do everything right the first time, but then again, Dr.s are just people, too.  :)

*Mayperl
Helpful - 0
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