Is it MS?

[LizH]

I have an AN that is now growing and pressing on my brainstem. I am going to have surgery in about 2 months and have it removed. It is about 4cm big now. I had FSR to treat it in 2001 when it was only 2.5cm big. It didn't work, the FSR failed. Now several doctors I have seen are saying that I have MS too because I have symptoms like someone with MS. I have no numbness, no tingling. Yes my muscles are weak and I have poor balance making me physically disabled. I use a walker. The surgeon does not think that getting rid of the tumor will solve my disability problems. I don't believe that I have MS. I think the tumor growing and pressing on my brainstem the cause. What do you think? Thanks. Effiya

[Palace]

Hello,


Some symptoms of MS:

Weakness
Numbness
Tingling sensations
Balance problems, stumbling
Depression
Blurred vision
Fatigue
Bladder problems
Slurred speech
Dizziness
Bowel problems
Cognitive difficulties
 


Palace

[Jim Scott]

Hi, effiya:

I'm sorry the FSR didn't kill the AN and that you need to undergo surgery.  However, I agree with you.

I wouldn't normally presume to argue with physicians but it does seem a clinical diagnosis of muscular dystrophy based on your rather typical AN symptoms is is a bit premature at this point.  There are tests that can help determine if you have MS, including a lumbar puncture (spinal tap) and MRI scans of the spine. I would certainly wait until after your surgery and subsequent recovery to see how your body responds before worrying about the possibility of having muscular dystrophy. If you don't improve, then you can ask for the necessary tests to determine the truth.  Of course, I pray that you do not have MS.  Based on your lack of MS-type symptoms, I doubt that you do.  Doctors are not omniscient and can (and do) make an incorrect diagnosis, especially when based on mere observance of your symptoms, with no testing involved.  Don't allow this to stress you any further.  Focus on your upcoming surgery and recovery.  That is what counts. 

Jim

 

[Crazycat]

Effiya,

  When I was getting sick, my symptoms worsening and increasing over a long period of time, I thought I had either one of two problems: MS or a brain tumor. It turned out that my problem was twofold: a huge AN growth and hydrocephalus, compounding my equilibrium problems. It required that I have two surgeries for these problems— one for a shunt installation and another for the tumor resection a month later.

  It is noteworthy that I believed at one point that I was becoming afflicted with MS, my symptoms seemed to mirror those of the disease so closely. I searched the net and read everything I could find that helped shed light on what I was going through. I read so much and narrowed it all down through a process of elimination and eventually diagnosed myself. I would tell the doctors that I was seeing that I probably had an Acoustic Neuroma. They would listen to me and go as far as saying, "possibly". I had to have the MRI with value contrast for a conclusive diagnosis. In fact, the pathology isn't even totally conclusive until the growth has been excised and biopsied to determine if the growth is either cancerous or merely "schwannoma".

 This kind of malady can make you feel like you are becoming crippled or that you're contracting MS. I know. I've been there. I went into the sickness as an athlete, jogging 5 miles a day through trails in the woods, over hill and dale. I have thirty years of weight training behind be. Yet, when I was feeling the full effects of the AN along with the hydrocephalus, it got so that I could barely walk and I was in excellent shape. After surgery, I hobbled around on a walker for about two weeks. I'm back up to snuff again, running at least four miles a day and weight training. I'm half deaf and make a living playing music and am actually one of the hottest bass guitarists in the New England area right now. I'm also 50 years old.

  I don't know what to say beyond this about your condition. While we all share the same malady (AN) we're all put together differently and suffer variations of how it can effect our bodies.

Please keep us apprised of your condition....

   Paul

[LizH]

Thanks Paul. Thanks Jim. It is encouraging to learn that others have had similar experiences like me.

I have seen about 5 Neurologists so far when my physical disability started and I was not getting a clear diagnosis. 3 in the US and 2 in Canada where I live now. I kept seeing doctors for help. One even told me that I was a mystery. I had an evoked potentiel test last year. The doctor didn't even tell me the results.

I was diagnosed with MS based on white lesions that were seen on my brain MRI. An MS specialist here in Toronto says that there is no medication that can be beneficial to me with the condition that I have. Another one in Newark, NJ did no tests but diagnosed me with chronic progressive MS because I used a walker to walk and the right side of my body is weak. The tumor is on the left side.

The neurosurgeon that I saw yesterday was too negative for my liking. He says that my physical disability will not go away after removing the tumor because I have MS too. He says surgery actually makes the MS worse. He said that I will be deaf on the side of AN and I will also have facial paralysis. This is major surgery with risks and mine is a complex one because I have MS too. I don't believe that I have MS and I told him. Some nurse told me that AN growing can cause problems and I believe her. I will keep praying that the outcome of my surgery is good and that a follow-up rehab will be beneficail to me.

[LizH]

I forgot to mention that I used to go to the gym 4 times a week but not any more, because of my poor balance problem I always have to hold on to something when I stand or walk. I am thin, I don't have a weight problem and no other problem with any of my my organs. I recently had a thorough physical. I have a mild form of arthritis. I am ok when I sit or talk. You wouldn't even think that I have a problem if you heard me talk on the phone. You have to see me with my walker to understand my situation.
I haven't had a lumbar puncture test. My MS specialist doctor says it is not accurate that's why he had me do evoked potential. I guess the results were positive. He hasn't told me though. I will ask him next time that I see him. He always schedules my appointments 6 months apart. I have had numerous MRIs. The lesions have not changed since 2004.
I don't believe that I have MS. I was born and raised in the tropics.

[Crazycat]

Effiya,

All you can do is hope and pray for the best as well as search for the best doctor you can find. I wish you were here in the Boston area because the staff at Mass General are top-notch. Chances are that they'd salvage your facial nerve as they have with everyone else that they've treated that I'm aware of. I had a 5 x 5 cm tumor and never had a trace of facial paralysis after surgery.

The reason I said those things about myself in that third paragraph of my previous reply was to demonstrate that, as bleak and frightening as things may appear now, it is more than likely that you'll get through this and get back close to normal. Diet and fitness will be crucial in helping you bounce back.

  How has it been conclusively proven that you have MS? How exactly has this been diagnosed?
Have all of the neurologists that you've seen said the same thing regarding the MS?

Keep the faith and keep in-touch!

Paul

[LizH]

No, not all doctors that I have seen are saying that I have MS. Those who are saying that are being influenced by the two who said that I do. I wish that I could have my surgery done in the US but you have to pay for any medical care in the US. In Canada I don't. I would like to consider Mass General in Boston but how do I pay for the surgery? If I could find someone to even lend me the money I would consider it. Yes Paul your tumor was even bigger than mine and if you didn't get facial paralysis that's a good thing. The diagnosis is being based on my symptoms and white lesions on my brain MRI. Like I said I have no tingling or numbness or fatigue anywhere else. Most MS patients have that.

[Crazycat]

That's right, you're in Canada. I remember that from before now.

Are you scheduled for surgery yet? I haven't heard any reports about doctors in Canada.

What part of Canada are you in?

Paul

[LizH]

I am in Toronto, Ontario, Canada. I will have my surgery in early April 2008 at the Toronto Western Hospital here in Toronto. No exact date has been fixed yet, I am on a waiting list. I will have physical therapy after surgery, the Neurosurgeon said.

[yardtick]

Effiya,
Who is the Dr?  I'm seeing Dr Rutka at Toronto General which Toronto Western is apart of.

Anne Marie

[LizH]

I was referred by Laperriere of Princess Margaret who treated the tumor with radiation about 7 years ago. The tumor didn't shrink. It is growing and now he wants me to have surgery with Gentile of Toronto Western.