Montel on Oprah

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tysmyboo
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Date Joined Dec 2004
Total Posts : 921
   Posted 3/17/2009 1:24 PM (GMT -7)   
I am just wondering if any of you all saw Montel on Oprah today?? Very touching and showed a little bit of what living with MS is like.
 
(Just popped in from Migraine Board because I was thinking of you all- Hope you dont mind)

Post Edited By Moderator (Gretchen1) : 3/20/2009 4:44:03 PM (GMT-6)


rhondab
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Date Joined Mar 2006
Total Posts : 2146
   Posted 3/17/2009 2:57 PM (GMT -7)   
Hey Sara!

Of course we don't mind! Thanks for the heads up! I didn't see it, but will be checking out the possibility of any reruns. Thanks again!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
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MISTYRAYNE
New Member


Date Joined Mar 2009
Total Posts : 1
   Posted 3/17/2009 3:06 PM (GMT -7)   
Hi
 
Just wanted to let you know I did see Montel on Orphy. I was very touched by his story. And I found out about the MS hug, which I had never heard of before, but have been having for years. I thought it was my asthma acting up but the doctors said it wasn't. I would have it several days at a time. And was even hospitalize with it once. But nothing found wrong with heart. So why don't these doctors explain this to you. I was even told by one doctor at Duke University that MS wouldn't cause my problem with swallowing, but I found out it does. They act like you don't know what you are talking about. I have heard enough MS cases say they are having problems with that, the doctors should have gotten the hint by now. The only way you can find out what really can be happening with ms is visiting a site like this. Just wanted to air my feelings about this.
 
Thanks yeah

Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 3/17/2009 4:45 PM (GMT -7)   
Wednesday
 
Hello:  I also saw Montel on Oprah.
 
a) I think he gave some incorrect stats.  He said that there was 1.4 million MS patients in America.  I have always heard that it was 700,000.
 
b) I feel bad that he is suffering rrom intense pain.  You can get meds for that.  While I do not suffer from any pain,  I CAN NOT WALK!!!!
 
I used to suffer from swallowing problems....my wife made the observation that whenever I would start a meal...I would cough.
 
So...I went for a swallow test....and before every meal, I have a little apple sauce...to tell/warn throat that food is coming...no problems now.
 
John tongue
DX'ed June 21st, 1987
 


Dave_NC
Regular Member


Date Joined Nov 2008
Total Posts : 87
   Posted 3/18/2009 6:10 AM (GMT -7)   
For those that missed the show.


http://www.oprah.com/article/oprahshow/20090305-tows-montel-williams-ms/1
Learning and living everyday to the fullest. My MS blog http://mylifewms.blogspot.com/


Gretchen1
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Date Joined Jan 2007
Total Posts : 3550
   Posted 3/18/2009 6:11 AM (GMT -7)   

DAVE!!!

Thank you!!!


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


tysmyboo
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Date Joined Dec 2004
Total Posts : 921
   Posted 3/19/2009 6:43 PM (GMT -7)   

ha ha....I fell out when I came back to check this thread, I promise you I know how to spell O P R A H...lol!!!

(head pain and a 5month old baby-see what happens! ha ha)


Sara-Migraine/Headache Forum Moderator
 
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tkelly3287
Regular Member


Date Joined Jan 2007
Total Posts : 142
   Posted 3/20/2009 3:29 PM (GMT -7)   
I saw it and was really depressed by it. I think it was a poor interview. They kept on saying the "life threatening disease" MS and I know that is true but I don't need it rammed into my brain 1000 times! It is not considered a fatal disease. Also, why did he not talk about the fact that he uses medical marijuana? That would not sell the book? I was really confused. I am glad the disease got the spotlight and he expressed MS pain but it was too much for me. I mean it was all suicides and crying. That is exactly what people with MS want to hear!!! yeah I am so not impressed- but I am sure a ton of books were sold!

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 3/20/2009 3:38 PM (GMT -7)   

Hey Teresa,

Hehehe, I thought the same thing.  He did not discuss the fact that he uses some MM for pain management.


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Hummingbird Lover
Regular Member


Date Joined Dec 2007
Total Posts : 24
   Posted 3/22/2009 4:32 PM (GMT -7)   
Hi Everyone! I haven't been around for a very long time! I have just reached the point that I have to have someone to talk to! I just read the post on Montel being on Oprah. I didn't see it but, I really didn't care to either! All those "Hollywood types" with diseases have no idea what "regular" people like us go through! One of you commented on his use of medical marjuana, yeah, you're right, it wouldn't sell books!
I think all those Hollywood types, help only those people who can really make them look good and don't have the time of day for some others! Hey, can you tell I'm a little upset right now? Just feeling very frustrated and alone right now.

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3673
   Posted 3/22/2009 9:36 PM (GMT -7)   
Hello I am White Beard and I have been posting over on the Chronic Pain forum, and I was just browsing over here. Because for  quite a number of years I have experienced some problems that the Doctors say are not related to my degenerative disc disease. Over the years I have repeatedly been told that I might have MS but it has never been confirmed by an MRI. I know that for the last two years I have been treated for Parkinsons, but after going thru an evaluation at the Movement disorder center at Rush in Chicago they tell me it is not Parkinsons, and they are weaning off the medications, and I am awaiting their report as I was told that they are recommending further testing and evaluation. Anyway I seen the post by Motown John. and I have a question does MS cause swallowing dificulties? I have been having swallowing difficulties for a number of years and have had and abnormal barium swallowing study. I also have some major neuro issues, balance and gait, I have to us a cane when I walk, and weakness. and allot of my symptoms are periodic,  they come and they go and often when they go I am left with some type of deficit. Espicially with my arms and hands! I have major problems with muscle spasms, I get them every where even in my hands and I have been on Baclofen for several years, I take 25 mg every 8 hours  and that med has been a Godsend for me. But even while taking it, every now and then I will have periods  that it seems like it isn't even working, and I will still get spasms. Anyway I was just  wondering if if is possible to have MS and go years without ever getting a diagnoses. I do get so frustrated, because I see these changes occurring in me and no one has given me an explanation as to why. And I do wonder where it will all end up at. Anyway I don't mean to crash this thread, but when I seen mention of swallowing dificulties I just thought I would post!
 
White beard


 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 3/23/2009 6:20 AM (GMT -7)   

Whitebeard,

We have no crashers here.....only new friends.  You are always welcome here.  You asked "Is it possible to go years with MS without ever getting a diagnosis?"  YES!! It takes most people years to get a diagnosis.  It is a very tricky disease to diagnose due to the fact that it mimics so many other diseases. 

Good luck and you are always welcome here.


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


dianna30
Regular Member


Date Joined Mar 2009
Total Posts : 90
   Posted 3/23/2009 8:15 AM (GMT -7)   

White beard,

Gretchen is right, many people with MS wait years to be diagnosed.  It took me four years, but I know others have waited longer.  It is a very frustrating process and the key is to be persistent.  Sometimes it takes visits with many different doctors before you find one who is willing to take you seriously and pursue all avenues to figure out what is going on with you.  One thing you can do is keep track of your symptoms: type, frequency, etc. so that your doctor has something to work with.  You might not have MS, but obviously something is going on, and you need to keep pursuing this until you get some answers.  God bless.

 


Be joyful in hope, patient in affliction, faithful in prayer (Romans 12:12).


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3673
   Posted 3/23/2009 11:39 AM (GMT -7)   
Thank-You Gretchen1 and dianna30 for your kind welcome! I can't begin to tell you how frustrating it has been for me! It seems allot of the neurologist contradict each other, I have allot of pain issues and one neurologist told me it couldn't be MS because pain issues is not part of MS! But then another doctor tells me it is. So who do you believe? One Doctor tells me one thing and another tells me something different! You know dianna30 you hit upon something, that is, or has has been one one of my failings, being persistent! You know after awhile I get so fed up with the doctors, and then I say to heck with them, and then later on I start having more problems, so I go back to the doctor, everyone just seems to treat the symptoms at hand but nobody wants to try and connect the dots, and follow through! Anyway I do thank-you for your advice, I do know I need to be more persistent   how ever  I find that is sometimes easier said than done! But you are right!
 
Thanks again
 
White Beard
 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


dianna30
Regular Member


Date Joined Mar 2009
Total Posts : 90
   Posted 3/23/2009 9:30 PM (GMT -7)   

White Beard,

You are right, being persistent is easier said than done.  I am definitely better at saying it. 

I just thought you might be interested...I was pestering doctors for two years about my symptoms, to no avail.  I finally gave up when my neurologist only wanted to treat my migraines-and continued to ignore my walking difficulty and cerebellar atrophy (hello! My brain is deteriorating!). 

I went two years without seeing a doctor, even for the flu.  Eventually I found a family doctor I liked and she forced me to see a new neurologist when I developed foot drop.  I am so grateful.  The new neurologist ordered a spinal MRI and within a month I had a diagnosis, orders for med's to slow down the MS, and med's to help improve my symptoms.

My point is, I know it stinks when you can't get answers, but you will never get them if you give up.  It may take 20 different doctors (I pray it's far less), but eventually you will get this figured out.  

 


Be joyful in hope, patient in affliction, faithful in prayer (Romans 12:12).


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3673
   Posted 3/24/2009 7:44 AM (GMT -7)   
dianna30

Thank-You I do understand your point and you are right! It is funny you mentioned "foot drop" I also have that, and I have had abnormal EMG's One major problem I have is with my arms and hand, I have a very difficult time holding my arms straight out in front of me, especially with my palms facing up, in fact I can't do that at all any more! just holding my arms out is a real problem for me, that is why I had to give up sculpture, I just cant do it with my arms the way they are. And the spasms in my hands, those can be such a pain! Actually the spams are the worst, I hate it when I get them in my neck and jaw! And the inner thighs, and the bottom of the feet! WOW! I don't think I have any where in my body that I don't get the spasms! But as I said the Baclofen has really been a blessing. One of the things that many of the doctors have noted, with me, is that the best pain reliever they can give me is Prednisone! When my Ulcertive Colitis acts up and they put me on the steroid, up to 80mg a day, all the aches and pains and everything ease up and even go away! But the side affects of it is the real killer, I don't swell up like allot of people do, but I get really emotional, and I cry at the drop of a pin! Before I was put on disability and when I worked as an RN on a Oncology Unit and I had a UC flare-up, I was a mess! When trying to care for a terminally ill cancer patient, I was crying right along with the patient and family, I begged the Doc to wean me off as quick as possible, you just can't do a job like that and be emotional and crying all the time! I can laugh about it now but it sure wasn't funny at the time! Smile!
 
Anyway when I made up a list of all my symptoms and what I go through, the only two conditions that fit the best was MS, and ALS. If it was ALS I think I would have been dead quite a while ago. The other thing that frustrates me is that when I do have a period when I have a bunch of symptoms, ( because allot of mine tend to be cyclic, as they come on stay awhile {from a couple of days to a couple of weeks} and then they go way.) But to see my neurologist it often takes 4 to 6 weeks to get in to see him. By the time I get in the symptoms are usually abated.

Sorry for venting! I would like to ask though, how important is the spinal tap for testing for MS? You know I have had the EMG's and Evoked Potentials, and one MRI of my brain, the on Doc said it showed possible mini strokes, but the my neurologist said it wasn't anything? They couldn't even agree about the MRI! But I have never had a Lumbar puncture done at least not in the last ten years! I do know I had a Myelogram done many many many years ago, and on the report was mentioned something abnormal about my spinal fluid, but I can not remember what it said and I can't find that report any where and I have even tried going back to the hospital where I had it done, but it was long before they went computerized and they nolonger have those records. Anyway any advice or guidance is appreciated!

Thanks for listening
White Beard


 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


dianna30
Regular Member


Date Joined Mar 2009
Total Posts : 90
   Posted 3/24/2009 9:20 AM (GMT -7)   

White Beard,

Have you tried going to your primary care doctor (PCM) when your symptoms flare up? You should be able to get a regular doctor appointment fairly quickly, then you will have a witness for your symptoms.  Your PCM may also be able to get you in quicker with the neurologist by calling doctor to doctor.  I was able to get an appointment in two weeks when my regular doctor called and set it up.

As far as the spinal tap goes, if your doctor is willing to run the test and you think you have MS, it's probably a good idea.  Most (but not all) people with MS will show abnormalities on the spinal tap. 
 
Another thing to consider-have you ever had a spinal MRI?  My brain MRI does not show lesions and my spinal tap was normal, but I finally got a spinal MRI and that is what confirmed that I have MS. 
 
It's kind of funny, but the spinal MRI also led to me being diagnosed with degenerative disc disease.  I had some severe back trouble last year but I was told it was just muscle spasms.  Turns out I have degenerative all the way down my back and two herniated discs.  So I guess doctors are clueless about other things besides MS. :)

Be joyful in hope, patient in affliction, faithful in prayer (Romans 12:12).


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3673
   Posted 3/27/2009 3:03 PM (GMT -7)   

diana30 I have been meaning to reply to your post but have had a small medical crisis I have been dealing with.   Wednesday night I started having severe mid back pain, seen my Docs nurse clinician yesterday and ended up in ER, now they are at odds as to whether I have a Kidney infection or the thorasic disc in my back are causing me problems. The full cultures are not back yet but I am on antibotics, and the Solumedrol pac is on hold! It is funny though because, I have been having swallowing problems the last two weeks along with the numbness and tingling in my legs and feet, heck even the constipation has been back ( I know that might sound funny but I have ulcertive colitis, and constipation is one thing I don't ever have problems with! Except when I start have all the other neuro stuff!) Anyway now I have such terrible pain in kidney area I can't hardly walk or stand, heck any movement is a real problem!!. I don't know if any of this is connected or not, but the pain sure came out of no where, and I hadn't even done anything that would cause it! Such is life I guess!

I have made an appointment with my neurologist  its the 29th of April,  he is new I seen him the first time the end of December. He is the one who sent me to Rush movement disorder clinic in Chicago. He was right I don't have Parkinsons, and they have weaned me off the Parkinsons meds that  I have been on for the last two years. He has their report now so maybe he will have some suggestion as to what needs to be done next.

I have had MRI's done of my back before, none real recently, I do have degenerative disc disease, nothing has ever been said about anything else though. I do know the Doctors at Rush said I should have new ones done on my brain, and my spine because the others are so old. With my thorasic MRI  being the newest and that is at least 3 years old.  I have had only one of my brain and that was near ten years ago, and there was a dispute over that, the neuropsych said I had had mini strokes, and the neurologist said the spots weren't anything, the guy reading the MRI left it open, as to what it was. As he said mini strokes with a question mark  and suggesting the Doctors determine what it is. ??????

White Beard


 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 3/27/2009 5:01 PM (GMT -7)   
Whitebeard,
 
My first lesion was misdiagnosed as a stroke.  It can happen.  Everytime I have an MRI, that one lesion is called a "vascular abnormality".  My MS neuro says it is a lesion.  So it can happen.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3673
   Posted 3/27/2009 9:02 PM (GMT -7)   
Gretchen1

Are you kidding me? I had three spots, and my neuro at that time seemed to indicated that it was all in my head, he was the one who said people with MS don't have problems with pain, and when I asked him about the spots he said and I quote "there definitely not strokes and I really don't know what they are but there not important!" and that was that! But that was close to ten years ago well maybe only 8 or so years ago! I know the neuropsych guy said it wasn't in my "head" and he definitely though there was some thing causing all these symptoms! And he didn't agree with my neurologist assessment of the MRI! !

Gretchen do you know if MS causes Central Apneas? I have sleep apnea, and there is three different types, the usual most common one is called Obstructive Sleep Apnea which is usually caused by the throat collapsing in on its self. The other type is called Central Apnea, and that is when the brain sometimes quits telling you to breath, and the third it Complex Sleep Apnea, and it is a combination of the other two. And that is what I have, but I have mostly Central Apneas, that is why I have the VPAP ASV machine with O2 at night when I sleep. The machine is a type of ventilator. Anyway I was just wondering if MS can cause central apneas? and is Sleep Apnea common with MS patients?

White Beard
 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 3/27/2009 10:48 PM (GMT -7)   
Hey Whitebeard,
 
Um no....not kidding.  Your post gave me chills.  You need to get a second and perhaps even a third opinion.  Yes I was told I had had a small stroke.  That neurologist has my total respect.  In a matter of weeks, he questioned his own diagnosis and went searching in a different direction.  He gave me my initial diagnosis of MS just a few weeks later and sent me off to UCLA MS center for the second. 
 
I poked around for you on the sleep apnea.  I presonally have not heard that much about apnea, but believe me, I am far from an expert.  I know that sleep problems are extremely prevelant so it does not seem unreasonable that apnea could be one of them.  According to site below, "sleep breathing" problems do occur in MS.  Apparently this is one reason for that infamous MS fatigue. 
 
http://www.sleepfoundation.org/site/c.huIXKjM0IxF/b.4834611/k.C558/Multiple_Sclerosis_and_Sleep.htm
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3673
   Posted 3/27/2009 11:41 PM (GMT -7)   

Thanks Gretchen1

I checked out that web site, it kind of disturbed me a little, so much of that stuff listed I have,  the leg and feet spasms at night, those are pure H*** and I did not know about urinary incontinence I know the treatment for sleep apnea took care of my nocturia, but during the day when the urge strikes to go I better go right that split second because if I don't well let's just put it this way,.... I go! One of the things that really bothers me is I get these symptoms and then they go away,  they  always come back though, but you just never know when! I don't know how most people are but for me I start questioning  myself  sometimes, I mean over the years a couple of the Docs I've had either blew me off  like my symptoms weren't important, or they  made me  feel like I was nut case and it ws all in my head!  Like that Doc I just told you about! Maybe I didn't say that right but hopefully you know what I mean! Anyway I sure hope my new neuro will be able to help me!

Thanks again for all the info Gretchen1

White Beard

 


 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


dianna30
Regular Member


Date Joined Mar 2009
Total Posts : 90
   Posted 3/28/2009 11:42 AM (GMT -7)   

White Beard,

I am glad you have an appointment with the new neuro.  You might be surprised, doctors have gotten smarter since the time when you saw your first neuro, so the right doctor should know what tests to run and how to interpret them.  A piece of advice-get copies of ALL test results.  You have already learned that all doctors interpret things differently, so it is always a good idea to have the reports at your disposable for the sake of second/third opinions.  It can also help you know when to be persistent.  If you know that there is a specific area of questionability on your MRI, you will know to keep pestering doctors to find out the cause.

I was thinking about your previous posts, and I can't remember where I saw it, but I did read about someone with MS who had trouble swallowing.  He had to eat a small bite of applesauce before meals to let his body know it was time to eat.  I don't quite understand it, but it was a doctor who told him how to deal with it.

With regards to your sleep apnea, it is possible that it is caused by MS, but then, you might just have sleep apnea.  It is very confusing, even doctors can't figure out how everything is related.  One thing I have learned is that some of us just seem to have every health problem under the sun.  Some of them can be related specifically to MS, but some of them can't.  I have: sleep apnea, degenerative disc disease, Hashimoto's Thyroiditis, IBS-D, MS...need I go on?  I work with my family doctor and my neuro, soon to be a urologist and an endocrinologist as well; we try to figure out what things are caused by the MS, and the other stuff we just treat as separate entities. 

Good luck with your appointment, I'll be praying that your doctor will run the right tests and be able to diagnose you.

Be joyful in hope, patient in affliction, faithful in prayer (Romans 12:12).


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3673
   Posted 3/28/2009 12:50 PM (GMT -7)   
Thanks Dianna I have seen this neurologist only once before, and he impressed me, he was right about me not having Parkinsons and he sent me to the place that specializes in it to confirm what he thought! He did tell that time that he was not afraid to tell a patient that didn't know something, but then he said "if I don't know I will send you to somebody that does". I find that encouraging anyway! But we shall see.
I do Thank You and Gretchen for all your advice and encouragement, I do appreciate it.

White Beard
 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3673
   Posted 3/28/2009 8:37 PM (GMT -7)   
I just read a post about vibration sensation, now is this common for MS too? The reason I ask is when I first seen this new Neurologist, he had me sit down in a chair and face him, he was also sitting in a chair, knee to knee, and he had me put my arms at my side and just sit quietly, then he put his hands on both my legs just above my knees and and just kept them there, sitting quietly and he told me to just breath in slowly and relax, after awhile he then put his hands on both my arms and did the same thing. He then told me that I vibrate and asked me if I felt like I was vibrating, I told him I frequently feel like that, but I did not know that it could be felt by others, I alway thought that it was a kind of internal thing that only I felt. Now I am reading this post, I mean I just kind of thought that it was kind of odd, I will have to ask him about it when I see him the end of April. How many odd ball symptoms is there with this MS?

I mean I know I have had allot of strange sensations, sometimes I swear that I am being stung by a bee or something on my legs and I swat at it but there is nothing there! or I get a feeling like something is crawling on my legs and burning I will sometimes wake up in the night and I swear that some one has a flame on my left heal, I mean it burns so bad, it will actually wake me up from a sound sleep, and it will not go away for anything! I have been making notes of all this, but is this also common for MS? Anyway it sure is making me wonder more and more about what is going on.

All this has bought memories of something that happened to me in 1987 two years after my disc fusion, I was still in the Air Force, and I was stationed at Scott AFB near St lousis and I was having severe gagging and swallowing problems, and I was sent down to Wilford Hall Medical Center at Lackland AFB, in San Antonia Texas for an evaluation, and the speech pathologist told me then that she thought I had symptoms of MS, and she was trying to get the Neurologist to do test but they wouldn't they insisted it was just nerve damage from my disc fusion. I had seen her several times, she was a civilian and she told me she she did not think that the Air Force was treating me proberly. As this gagging and swallowing thing came on out of no where, it lasted for well over a month and a half and then went away, and then came back a few months later and lasted a few weeks and then again went away, and this time for many many years! I have never told any body about that, because at first the AF was trying to make me out to be a psych case, they said I was just doing the gagging to get out of doing work, it is funny because they said the same thing when I was having all that trouble with my neck in 1985, and I ended up having a massive herniated disc at C6/7, but anyway there ENT Docs at Wilfor Hall thought it might be my tonsils that was causing me to gag so they took my tonsils out and they said even under anesthesia that I was gagging and that they could not stop it. The ENT surgeon later told me he had never seen anything like it! After that they just said it was nerve damage from my disc fusion! But it is odd because every now and then I will have problems with the gagging and it will last a week or so sometimes longer and then it goes away but it usually aways happens when I have the other symptoms. I guess I should stop reading about all this stuff, because the more I read the more I sit and say but I have had that! I do find it comforting though to be able to talk about this stuff with out everyone thinking I am crazy or going mad!
Thanks for listening to me vent!
White Beard
 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV

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