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335728 tn?1331414412

DR. ABHIJEET...I have no one else to ask...

I was diagnosed in 1993 with MS.  It was noted on MRI that I had numerous lesions on my brain that were highly characteristic of multiple sclerosis with lesions located in the periventricular white matter.

The results of my Lumbar Puncture which showed that both the albumin and absolute levels of IgG were markedly increased.  In addition I had an increased IgG index and daily rate of IgG synthesis at 45mg/day which are highly charateristic of multiple sclerosis and seemed to support the MRI observations.

I was then in remission until 2007.  In Feb. 2007 I was diagnosed with Paratrigeminal Neuralgia and treated with IV Solumedrol 2 times as well as weaning Prednisone 2 times.  Between February and June 2007 I was off work due to the fact that the Paratrigeminal Neuralgia could not seem to be gotten under control.  In July 2007, I started to have problems with pain in my hands and legs, neuropathic pain in my feet, severe muscle spasms in my legs, trouble with a lack of equilibrium, paresthesia, a bout of severe vertical double vision lasting 10 days.  An MRI was done after the double vision problem and I was called by my neurologists nurse and she said that my MRI was positive for lesions that are characteristic of multiple sclerosis and I was advised to get a second opinion.

I went to a new MS Specialist and was told that from what she read in my file, she does not believe it is MS and that my disease is not active.  She said that I do not meet the criteria for receiving the DMD's and that she doesn't know what is wrong with me.  She has done no further testing and will only deal with me through my family doctor.  My family doctor has admitted to having very little knowledge of MS but she told me she would muddle her way through.

To date, my family doctor, like my MS Specialist have done no further testing to find out what it is that is ailing me.  I am still having neurological symptoms including paresthesia, neuropathic pain in my legs and feet, the drooping left eye has never gotten better since February 2007 Just to name a few symptoms.

My question to you is, I am being denied the disease modifying drugs even though I have had two clear diagnosis of the disease and had one CIS in 1993...should I seek further advice from a different MS Specialist?  The first MS Specialist told me that the problems I was having were "underlying symptoms of MS".  

I don't know what the future holds as far as the MS goes but I don't want to find out in 6 months that I have Optic Neuritis and lose the sight in my eye when this possible could have been avoided.

What is your opinion?

Sincerely

Rena705
7 Responses
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368886 tn?1466235284
MEDICAL PROFESSIONAL
Hi.

Yes, VEP is 'generally' done to detect ON. But the scope of VEP is not limited to the optic nerve. The entire visual pathway is covered. And the pathway includes the periventricular white matter, too. I do not feel the necessity of one more specialist's opinion.

Regards
Helpful - 0
335728 tn?1331414412
VEP is generally used to detect whether or not Optic Neuritis is evident...I have currently no symptoms of Optic Neuritis so I don't understand what benefit VEP testing would have.

My first neurologist is the neurologist that first diagnosed me in 1993 via the positive MRI and LP which he performed himself.  He became alarmed at the vertical double vision and had no other answer as to what may be the cause of the vision problem.  Do you really think that there would be a need to re-confirm the diagnosis that he made originally?

Do you now think that I should seek the opinion of a third MS Specialist?

Regards
Helpful - 0
368886 tn?1466235284
MEDICAL PROFESSIONAL
Hello.

1) Relapse duration can be variable. From your description, it appears that you still have active symptoms. Your disease could be e relapsing - remitting type. The VEP is a sensitive test. It may not be specific for MS.

2) Your first neurologist probably wanted to re-confirm the diagnosis of MS. In such situations, often the treatment is started by the primary doctor even if the diagnosis is confirmed by the second one. If the first doctor is not sure of what the patient has, a referral for a second opinion means "I am out of it".

3) I agree I made a jump to an assumption that DMDs were started by the first neurologist. According to The Medical Advisory Board of the National Multiple Sclerosis Society treatment with DMDs should be initiated as soon as possible following a diagnosis of MS. It is also recommended that therapy should be continued indefinitely, unless there is clearly no benefit, side effects are annoying or intolerable or a better drug is available.

I think the DMDs should start. And the first neurologist appears to be the one who can prescribe them.

Regards
Helpful - 0
335728 tn?1331414412
In response to your post that you made in an attempt to supposedly answer my question, you made a few very obvious errors that I would like to point out to you.

My relapse was last July...VEP isn't going to do me any good now.

I am not nor ever was on any dosage of DMD's.

My earlier neurologist advised me to get a 2nd opinion after he did an MRI which was positive for MS...can you tell me why I would go back to him?

Rena705 Confused
Helpful - 0
368886 tn?1466235284
MEDICAL PROFESSIONAL
Hello.

I guess inactivity will do more harm than the MS itself. In fact, these days, MS is not considered to affect the quality of life if it is treated appropriately and promptly, as it was done since 1993 in your case.

Please arrange for the VEP as soon as possible. This is a diagnostic test for Optic Neuritis. These symptoms do appear to be a relapse.

Are you still on the lowered doses of the DMDs?

From what I have red in your post, it seems the new Neurologist has failed to establish a good doctor-patient relationship with you, which is not good for the long term outcome. Can you consult your earlier neurologist again?

Concerned.
Helpful - 0
368886 tn?1466235284
MEDICAL PROFESSIONAL
Thanks patsy10. Almost missed the post.

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