Neuro changes tune and refuses to treat.

[nyangel60]

I saw the neuro yesterday who I have been seeing for a while now though infrequently. Yes, the one who told me he won't treat me with any drugs until I have another attack. Well he had said it was definitely MS and now he is saying probable MS. He said I had only one attack as no enhancement is seen when the MRI is done. He is sending me for MRI of the brain. I know the machine at the hospital is old and is no more than a 1.5T. From my reading I realize some lesions are hard to see especially in the spine. I told him about the worsening of symptoms such as the mobility and even more the bowel and bladder issues which I am almost certain that worsening of existing symptoms and new symptoms are relapses. It seems he is expecting a dramatic relapse like what hospitalized me. He said the drugs are not good for the liver and bone marrow thus not wanting to put me on anything.

I am totally fed up. It brings me back to, do I have MS, APS or both? One thing that makes me think MS is at play is the positive CSF for Obands which they say is absent if the attack was caused by APS. I also found out a positive test for aPL seems to qualify you as having APS according to the group I am in but I read otherwise that along with the positive test a thrombotic incident is also needed especially before being placed on anti coagulants. I took my 20 year old daughter to get tested today. I pray she does not test positive.

So I feel lost. I am not well. Something is surely wrong but I am not a doctor and so cannot treat myself and I cannot seem to find one who wants to take the time to help me. I don't have more money to spend going outside Canada to seek help. Today is not a good day for me. I hope tomorrow is a better one.

Thanks for reading and have a great day.

[AmPac]

Whoa, I'm confused.... What does APS have to do with MS?
The presence of aPL in CSF with out a specific clotting incident does NOT confirm Dx. You have to have had an event AND have aPL present. You will not have MS symptoms with APS other than vision problems and migraines.
I can find no site that says you will develop spinal lesions from APS.
PLEASE see someone else!

[PeninaD]

Time to find a new doctor, DITTO!
Hope that you have an easy time of that.

[Guitar_grrrl]

Ditto to all of the above - kick this one to the kerb.  Next!?!?!?  What a ninny he is.   Grrrr.

[Lulu54]

You need to find another neuro - one who knows the topic matter and isn't making us answers.  This doc has several things wrong - and has shown he doesn't understand how these MS drugs work.

In your Province would there be other neurologists you can see?  i wonder if this one isn't concerned about diagnosing too many people with MS and draining the financial resources of the province.

Many, many people with MS NEVER have enhancing lesions show on their MRIs.  Why?  Because the timing has to be pretty darn perfect to catch them in an active stage.  Lesions only light up from the contrast is they are about 40 days old or younger.  So a lesion that has been around for 8 weeks and is quiet, isn't going to enhance .  There is such a small window of time to catch lesions enhancing and most of us are only getting MRIs every 6 months or even once a year during the diagnosing phase.  

Hang in there and find that new neurologist - this current one needs to be shown the door.

~Laura

[nyangel60]

Ess, he is living in a time warp. He keeps harping on enhanced lesions. What if I did not do an MRI when the lesion was active. He wants me hospitalised before it will be a flare up for him. I get the impression he does not like the drugs plus he prefers to err on the side of caution.  I cannot get an MS doc but I will try to find another neuro.

Something is wrong and I need a doc to tell me what it is and do what is to be done.

Thanks for your input.
Dee

[nyangel60]

Thanks for responding Alex and wow!! 40 years must be a record and very frustrating. I had no idea that getting medical help for anything more than the "common cold" was this frustrating. I am reading more and more of other people's experiences that make mine look like nothing. You are a trooper to have come up against Ovarian cancer go through the hoops again and is smiling.

Thanks for sharing your experience. I really wish you the best.

Dee

[essdipity]

This doctor is living in a time warp. He's making generalizations about the MS drugs that don't hold up under scrutiny. With so many treatments available today (10), there's bound to be one that is ideal for you.

It sounds to me as if the doctor is waffling because he doesn't like the drugs, so is using whatever excuse is handy. I don't know whether or not you have MS and neither does he, but he's supposed to. My Rx: a new and better doctor.

ess

[HVAC]

I know how frustrating it can be. It took me over 40 years to be diagnosed with MS. I went to the Mayo in 1965. I went to Duke in 1969 and was told I had something wrong with my brain stem.I saw other Neurologists through the years.In 2007 I went to a half a dozen Neurologist. They all said some day I would be diagnosed with MS. I finally had a LP with 12 o bands so I was diagnosed.

It took me six years to be diagnosed with Stage IV Ovarian Cancer, By then I had Cancer in 15 places.

I am living well with both diseases. I have spent a lot of money but I am alive and happy.

Alex