NEW DIAGNOSIS MS ? More opinions

[ukcountess]

I have just been informed by a neurologist ( very matter of factly ) that I have MS. No Treatment recommeded excpet PT. Had sudden loos of function to both feet and right leg 3 weeks ago. Need brace to help walk w/cane. Ony other Sx was 8 years ago when I had head and shoulder jerky type seizures and svere dizzyness. Went away after 6 months and ENT working on inner ear crystals. Breast CA 2 year ago now this. Eyesight worse but no blurred vision. An 60 whcih is a little old for this Dx I think. Numb feet as well as tingling all the time, some pain. Body generally very weak, no enery. Rheumatologist put me on steroids, which is only making me eat like a horse and gain weight. Not sure what will happen in future. Am I going to be w/c bound. Had to sell my 5 speed car ( cannot drive it now) Will these sym[toms go away after the steroids?. I really don't want to pursue Interferon and that kind of drug ( had enough chenmo for a lifetime) FYI , all MRI,s excpet for the one 8 years ago apear to show potential MS. New Sed rate 11 and ANA neg for autoimmune Dx.
I think I need another neurology opinion w/MS expertise. You all that have been through this may be able to help direct me form here. Every MD will give you a differnt opinion. What about heavy metals poisoning , could this be case ?.
I really value all you opinions>

[biowham]

Your neuro left you woefully short of information and woefully undertreated if the dx is correct. The suggestions above are excellent: Get all of your medical records from this doctor and take them to an MS specialist. Make sure that you sit there and ask ALL the questions you have until you have the answers to them. It's ridiculous that you're so in the dark about this, thanks to the neuro, AND that the only treatment recommended is PT, for crying out loud. Good grief.

And welcome to the boards.

E

[monotreme]

Did the neurologist tell you what type of MS you have??  The DMD drugs are only effective in Relapsing Remitting MS.  No drugs have been found to be effective in slowing down Primary Progressive MS.  Maybe you should see another neuro and seek out a more specific diagnosis and course of treatment.

have the doctors made sure none of the nerve symptoms are a side efect of any of the chemo drugs you were on??  I believe some can cause nerve damage.  You might look into that too.

Elaine

[LLWB]

Your neuro must have some basis for his dx. You need to find out what this is.  Get copies of your testing, MRI's, etc. And yes, yoou need medication. As Rena said, they cann lessen how many attacks you have and the severity. If indeed you do have MS, without the meds you may indeed looking at a w/c. With the meds, that may NOT been in your future, so these are important decisions to make. Nothing to decide on the spur of the moment because yo're tired of the whole mess. Hope that made sense. I also am 60, and pursuing a dx. My last shot will be in April, when I see a MS doctor who is HIGHLY recommended. Our resident Den Mother Quix will have more to say to you. She tired herself out yesterday, so it might take her awhile to answer you, but her informating will be invaluable to you. Hang in there, I know it sucks, but the aternative is worse.

[Rena705]

I am so sorry to hear about all of the suffering you have endured over the last 2 years but I would also like to Welcome you to our Forum.  I have to start by saying the unfortunately, we here are not doctors so we are not able to make any diagnosis...we can however help to guide to toward a possible diagnosis and we can provide a LOT of support!  We do have one member that is a retired physician who also has MS and she can be of a great help!

To begin with, I believe from your post that you have been seeing a regular neurologist, not an MS Specialist...am I correct?  Do you have access to an MS Specialist?  I ask because an MS Specialist is trained to look at an MRI in a different way and they have the experience to see different things than a regular neurologist or a radiologist.  Have you had a FULL Neurological Examination done in the past?  This exam should last at the very least 1/2 hour and this exam can tell the doctor about your mental status, cranial nerves, motor skills, coordination and gait, reflexes and senses.  It is imperative that you have this examination before a diagnosis of MS can be made with a clear conscience!

I really know nothing about heavy metals poisoning...not sure if our resident g.p. would or not...her name is Quix if you want to forward a separate message about this to her.

Did your doctor not make available to you any of the disease modifying drugs?  The names of them are Avonex, Betaseron, Copaxone, Rebif and Tysrabi.  These drugs have been proven to slow the progression of the disease.  They will not however assist you while you are in a relapse but they will lessen the amount of times and the severity of your relapse.  This is something that you really need to speak to your dr. about but I would say that seeing an MS Specialist first is your best course of action.  If then the diagnosis that the Neurologist made is incorrect you would not be on the meds unneccessarily.

Please know that you have honestly found the best MS forum that is available...we here on the forum are genuinely concerned about your welfare and now that you are here we hope that you will stay.  You can come on her and rant and rave, laugh or cry and you will always find support.  Some of us have been diagnosed with MS other are in what we call "limboland" where no diagnosis has been made but the symptoms all pretty much point in the direction of MS and it can be a VERY frustrating position to be in!

I hope that you will have a chance to answer my questions and hopefully we can get to the bottom of this and you will finally have some relief!

Lots of Hugs,

Rena705