Going To MS Specialist for Second Opinion

[myrudy]

I recently went to Dallas to an MS Specialist to seek a second opinion for Relapsing-Remitting MS.  I had been on Avonex in 2010 and then the MRI of my brain came back with white matter lesions with Microvacular Changes, but No Pattern suggestive of MS.  I am going for tests (MRI ) of Brain, Neck, and Back.  My Dr said I did have an abnormal LP which showed too many WBC's and that the changes in my brain which were Microvascular could cause lesions.  I have all the symptoms of MS.. Numbness of feet, legs, Heat Intolerance, Visual Problems ( double vision), Imbalance, Short Term Memory disorder, and Spasticity.  I am so confused to what is going on.  This has gotten worse since Oct of 2011.  I am also being tested for Pancreatic Cancer.  I do not have diabetes or extemely high BP. mydog

[jensequitur]

I have experienced buzzing in my ears, but I think it's paresthesia.  I also get a clicking or thumping in my ear, which we've decided is palatal myoclonus.

[pauper]

I, too, have had that buzzing or sometimes clicking noise right above right ear.  So bad at times that I could hear it outside.  It would last for a few weeks at a time, then go away, and come back each month.  It lasted for about six months and finally went away.  Since then, I have had numbness and tingling in extremities, leg tiredness, some eye pain and visual disturbances.  In limboland right now as far as dx. with neuro and PCP.  

I have read that buzzing or clicking noise in or above ear can be a type of myoclonus in MS.  

Best wishes to you, and hope you find some answers and help in getting well.

[myrudy]

Hi LuLu  I am not getting the results of the MRI's for a few more days. It won't be read till Monday.  But I did talk to someone who mentioned this Acoustic Neuroma to me and I have never heard of it. But the fact is I have had this aweful "Buzzing-Bug noise in my right ear since December.  I can hear it even outside. I have somewhat more problems with my vision, and balance at times.  Have had ongoing headaches too. Of course I am not ruling out the MS, but did see these images after getting done and saw what was my MRI of the brain. There were, which appeared to be 2 solid white balls on this picture; but not for sure if it was mine.  I had been diagnosed with Meniere's Syndrome in 78 in Lousianna. I took a Chloric test in the right ear, and it was positive as well.  I was told this these tumors can grow slow then get worse over years. Ever heard of this?  Some of the symtoms could be a contibuting factor as MS. I know this is driving me crazy and my legs and thighs are killing me, and making it so hard ot walk. I guess I will find out and let you know.  Thought maybe you may be familiar with this??  bye for now myrudy

[supermum_ms]

Glad to hear you got through it relatively ok, not sure if it helps but my DH has been known to fall asleep whilst at the dentist lol oh hang on, he does have (had?) sleep apnea so that might explain why he does it.

No clue what the noice your hearing is, auditory sx are not that common in MS but not altogether unheard of, did you mention it to the neuro? I'm sure someone will know something and chime about this one.

Cheers..........JJ

[myrudy]

Hi LuLu"  my nickname is myrudy and I put mydog.. sorry for that confusion, Oh well what's new??? Duhhhh   I did have the MRI's today and was in the twightlight Zone when I got out of that PIPE HOLE.. It took nearly 1 1/2 hrs total so hope to find out something in a week or so.  I was so tired and totally wiped out afterwards.  I will let everyone know how it went.  Say a prayer for me.  I wondered.. How would this BUZZ noise be realted to MS?  It is driving me nuts??  This kind of constant off and on but consistant noise.  I could even hear it in the MRI Machine!!!  It is worse when I get excited or over hearted too.  Thought maybe you or someone may know?  Nice talking to you.. myrudy

[myrudy]

Hello"  I am seeing Dr Ben Greenburg at the MS Clinic in the UTSW Professional Bldg. He is real nice.  He is one that does not diagnose MS the first initial visit due to various reasons, even though I had a dx in 09 by a Neurologist and put on Avonex.  He likes to see all the tests done along with the Viewing of the MRI's.. I guess I will find out something within a week or so. Had them done today.  I guess my O2 dropped while I was in there because she said she had to turn up the air in the MRI machine. I kept finding myself dozing off.. even with the noise.  I am also being tested for Pancreatic cancer there at the Genetic Cancer Simmons Ctr. and will get that back in 2-3 weeks.  Good to be here with all of you!!!!  myrudy

[jensequitur]

Hey, who are you seeing in Dallas?  I know of two facilities, and they're both great - Texas Neurology with Ted Phillips, and UTSW Multiple Sclerosis clinic.  I see Dr. Courtney over at UTSW.

[Lulu54]

Good luck with the MRI today - be sure to come back with your questions and to share more of your story.  That is incredible about your aunt - I am so glad she is doing well. It sounds like you might be in good hands with your doctors , are you feeling comfortable with how this is progressing i the medical diagnosis area?

[myrudy]

Hi JJ  I am going for my MRI's today on brain, neck, and back and hope they find something.  This is rediculous and walking is so frustrating. I've had this strange "buzz or bug" noise above my right ear for 3 mos now and forgot to tell the MS DR. I hope this sheds some light on things. I was really interested in the information you sent back to me from my prior inquiry. Thanks. I read about the ALS.. Interesting.  It is so difficult to stand and just Walk w/o holding onto something in order to maintain my balance. I have had to take a cab home after walking to the store 10 mins away due to the pain and heaviness in my legs. I can't stand the heat either; Makes this all worse.  I know I have Radiculopathy bad and Neuopathy, but told no diabetes. Sometimes I thought I was going to just stop moving!!!  I dread lying on my back for 1 1/2 hrs because I go numb and my feet and legs get spasms so bad.  Although no siatica pain or pinched nerve in back as some people get.  So this will be interesting. I will be sure to keep informed as to what is going on. I hope this is the last of this for now!  I will find out if I have a Pancreatic Gene in about 2-3 weeks from the study.  I have had pancreatits and don't smoke or drink. My family has a HX of the cancer.  My first aunt has MS and was diagnosed at 74 so that really threw the DR for a loop.. She is doing pretty good and her Dr said she had it for at least 20 yrs!! So I guess anything is possible.  She is not on therapy and is 87 now.  Now that is something right?  Thanks  myrudy

[supermum_ms]

Hi Mary and welcome to our little corner of the web!

I see you've been dx with RRMS for about the last 6 years, which would put you outside the usual diagnostic age group (20-45), not that that means you cant have MS, no not at all. I'd expect though, if someone is out side of the usual dx cohort, diagnostic testing would of been quite extensive. So if i'm a little confused how you got dx with MS without MS lesion locations on your MRI's, i expect you'd be rather boggled.

It's been over a year since your MS dx was first questioned and pancreatic causation was coming up back then, have you been left hanging all this time? Gosh I hope not!

I think you'll find your dr might be talking about 'white matter disease' which basically has the same sx as MS, i'd just hit my mid 40's when i found out i had a chronic number of white matter and deep white matter lesions, so i've done a bit of reseach on white matter lesions lol.

"Diagnosis
White matter disease is usually diagnosed during a Magnetic Resonance Imaging (MRI) scan or a computer tomography (CT) scan. Both of these pieces of equipment are able to project any abnormalities of the white matter in the brain onto the taken image. However, abnormalities in the white matter of the brain are common occurrences with a host of different disorders, so more testing must be done to determine actual cause.

Diseases
There are many diseases that can cause white matter disease. Most commonly white matter issues are seen with diabetes, high cholesterol, atherosclerosis, and high blood pressure. It can also be seen leading up to, or after major events such as a stroke.

Blood Vessels
Most chronic white matter disease manifests through damage on the small blood vessels surrounding the matter itself. These blood vessels help keep the white matter of your brain irrigated. This is why most chronic white matter disease is caused by disorders that specifically target the blood vessels. Over time diseases such as atherosclerosis and high blood pressure take their toll on the smaller blood vessels first, such as the ones responsible for irrigating the white matter. The damage to these blood vessels is what causes white matter disease.

Risks
Small amounts of white matter disease appear in everyone as they age. However, large areas of white matter disease, as seen with chronic white matter disease, are often warning signs of more serious conditions such as multiple sclerosis..........



Read more: Chronic White Matter Disease | eHow.com

http://www.ehow.com/about_5048144_chronic-white-matter-disease.html

http://www.ehow.com/about_5066295_white-matter-disease-symptoms.html

I had to look up what the high white cell count in your LP could indicate, still not exactly sure what it could be but this might help a little.

From Wikipedia, the free encyclopedia

"Pleocytosis is a term used to describe an increased cell count {Gk. pleion more}, usually referring to an increase in white blood cell (WBC) count in a bodily fluid, such as cerebrospinal fluid (CSF).[1] It is often defined specifically as an increased WBC count in CSF.[2]

It is indicative of an inflammatory, infectious, or malignant condition. CSF pleocytosis in patients suspected of having Guillain-Barre' Syndrome (acute demyelinating polyradiculoneuropathy) should prompt consideration of other diagnoses, such as HIV, CMV, West nile virus infection (in appropriate setting, Lyme disease (neuroborreliose), or other infectious or inflammatory conditions."

Sorry i'm not sure i really helped much, but i'm sure if you'd like to keep in contact we'll do what we can to help you through this, at the least collectively we are very good listeners :-)

Cheers.........JJ