Going to confirm MS diag

[Teiper]

I'm scheduled to see a top neurologist in my area.   My history is: status post left breast mastectomy 2008, non-invasive.  No chemo or radiation required.  Left with bilateral axilla lymphadema and manageing it.   Had episode of vertigo in June 2010.  An arrant middle ear 'stone' was put back in place with Epley manuever. MRI for acoustic neuroma was negative and MRI was basically normal.   It was then noted that I also had a virus in the right ear.  Occupational therapy and training in optical exercises that tricked my brain into thinking that dizzy was normal.....and then I wasn't dizzy.  Vertigo subsided but returned May 2011; now effected by heat.  New onset of blurred/double vision. fatigue.   I've had a history of lumbar and thoracic disc bulging/henriation.   Recently experienced numbness in legs when looking down.  Primary doc ordered a cervical MRI that showed disc degeneration and an incidental finding of a white plaque lesion at base of brain.  MRI of brain now showing progressive/extensive white lesions in brain bilaterally with slight enhancement on the right.  MRI was with contrast abd done with MS protocol.  I'm 56 years old and there's noe family history.  
I've done some research and hope this is not Primary Progressive but know at my age, it's possible.   I'm scared.  I'm told the meds they use can kill you liver, your heart or make you suicidal.  I only want about 20 more somewhat decent years.   Anybody got any encouraging info??    Thanks and bless you all

[Lulu54]

Hi teiper and welcome to a great place to learn more.  We have wonderful health pages here written my our members in straight forward language that will explain a lot of necessary facts.

Now about the drugs damaging your liver or heart of causing suicide - that is quite the trifecta of erroneous information.

The interferon drugs (rebif, betaseron, avonex) can cause liver damage.  Any neurologist prescribing these drugs will order blood screening and do it regularly.  I know mine won't renew the rx if the patient doesn't go and do the blood test.  If they see problems, you can go off of that drug and try something different.

I have never heard about damage to the heart because of MS.  I am a heart attack survivor and follow the heart information very close.  If you have more infromation, I would very much like to hear it.  But from my perspective, there is nothing to cause you or me worry about our heart.  Gilenya, the new oral drug for MS, is known to cause a drop in blood pressure on the intial dose, but that is monitored closely and they say that this reaction causes no permanent damage.

Suicide is not caused by the MS or any of the drugs.  That said, we know that people with MS have a higher rate of suicide than the general population.  I can't argue that this can be a difficult disease to live with for some people.  But there are a lot of others out there who go through life with their MS and don't have major problems with their disease.  There is no way to predict which group you or I will end up in.

I was diagnosed at the age of 54, just three years ago.  Like you, I immediately assumed that I was in a worse way than just RRMS for my diagnosis.  My neuro does not seem to think that I am anything else, and he is well known and respected in this field.

You may not get these answers as fast as you are thinking - your medical history is pretty muddled with all the different problems and surgeries the neuro might take a long time before finally saying what is wrong.  Just a warning - this can take a long, long time.  I hope the doctor sees a clear picture and doesn't keep you in limbo.

I hope we'll see you around here.  Be well, Lulu

[Teiper]

Thanks for your 'snap-out-of-it'  lead.  Really, it's sometimes exactly what I need. You were not insensitive at all.  I'm NOT down for the count and refuse to go 'quietly' into anyone's good night.  Reading your story, 'black holes' and all, and considering your age...(forgive that I hope) gives me quite a bit of hope and inspiration.  I don't like feeling sorry for myself and am seen as a tough bi-och, by many.    I hear enormously wonderful things about the neuro doc I'm going to see.  I've just had to wait 6 weeks to get in to see him and it's been a long 6 weeks.  
He is a leader in this field I'm told and his team includes those who can help me and my family get our heads wrapped around this.   I'm confident they know about the meds and are thorough I trust  
I'm grateful for this platform as it's shown me I'm not alone.  My chiropractor is even a holistic healer who wants me off of gluten and sugar and to start yoga.  I get tired just thinking about it but promise I will.  There are many in my corner.  
It's been a rough road these past 2 years as there were clinical mistakes made that compromised my recovery; required 4 surgeries rather than 2, and left me with a chronic condition I was bitter about.   But as your logon inplies.....'facing forward' is my best bet.             Thanks for your input and your well wishes.   I return the thoughts.  

[facingforward]

I didn't mean to be insensitive to your dizziness.  I walk on a treadmill (purchased used) that has stationary arms that I can hold on to.  When I was first diagnosed and dizzier, I exercised on a cheap garage-sale elliptical machine that I could hold on to tightly.  (If you are in a metropolitan area, used exercise equipment always seems to be available.)

[facingforward]

No one can predict your future, but I can offer you one patient's perspective.

I was diagnosed in 2002 at age 51 with "multiple" lesions on brain and a large enhancing lesion on the cervical spine and a smaller non-enhancing thoracic spine lesion.  (A subsequent MRI reported that I have 60-70 brain lesions, of which 15-20 are classified as black holes).  
Nine years later I'm still ambulatory, still have reasonable quality of life and am considered "stable" as far as MS is concerned.  So you may well have a number of "somewhat decent years" in your future.  (Like you, no one else in my family has been diagnosed with Multiple Sclerosis.)

With regard to drugs killing your liver or heart or causing suicide:  My neurologist is familiar with the complications of any drug he prescribes.  

When I was on an interferon (a drug that lists depression and liver complications as possible side effects), he ordered blood tests to check my liver enzymes and my blood counts at every visit.  (I think that, with such testing, drug-induced liver damage is detected in plenty of time for the patient to be taken off the medication and for the liver to recover.)  

We also discussed mood/depression before he prescribed the drug and at each appointment.  

Among MS patients, even those who are not on a disease modifying drug that lists depression as a possible side effect, depression is often present.  Good neurologists are watchful for signs of depression and willing to prescribe anti-depressants.  

Yes certain of the treatments may damage the heart, but those treatments are usually reserved for patients whose MS progression is rapid and who have not responded to other treatments.  (Also patients on those treatments have their heart functions monitored very closely.)

You have already been through a lot medically.  Try not to stress out about MS.  Relax as often as you can.  Find ways to laugh and have fun.  I have found walking a lot (for exercise), avoiding stress and eating a sugar-free/milk-free/wheat-free diet helps me.
    
Wishing you well.