Re: Has anyone experienced this?

[Guest guest]

Hi Ebony.. I'm I'm not certain if I understand what sensation your talking about.. I get "banding" around my chest and rib area.. its like a squeezing sensation.. like a rubberband is tightening and releasing.. its quite uncomfortable.. And we have some of the same symptoms as MS.. That's why they have a hard time distinguishing from MS/NS..

Has anyone experienced this?

Hi everyone. It was very nice meeting some of you at the Indy Conference. Rose, you were very sweet and gave us a ton of info. We have another question though. As some of you might know, has been off of his Cellcept for the past three - four weeks because of the insurance company. We were finally able to get it from the pharmaceutical company this week and he has started retaking it. However, in the last couple of weeks, he has started to get some symptoms again and I am a little worried. His arm pain is getting worse even though he is on Lyrica and other meds for nerve pain. Also, he has started having a band like sensation across his chest and stomach. After researching it a little bit, I found out that it is called "the ms hug" in some circles. Supposedly, MS patients sometimes get the sensation when a new lesion appears on the spinal cord. Does anyone here ever get that sensation?Lastly, he went to the doctor today for some pain, sometimes sharp, he was having in his chest. The doctor believes that he has pleurisy and has ordered a chest xray. Has anyone ever heard of this? It appears to be a viral inflammation of the wall between the lungs and the ribcage. I hope that it is that and not that the sarcoid is appearing in the lungs.One last thing, his neuro now wants him to work himself up to 2000mg of cellcept a day when before he was taking 1000mg. I am waiting for a response as to why he wants him to essentially double up. Is it just me or is that a big increase in dosage?We have an appt with Dr. Baughman next month so maybe he can also help with all of these questions that we are having. Thanks for all of your help.Ebony and

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.15.1/1079 - Release Date: 10/19/2007 5:10 AM

[Guest guest]

Hi, Ebony! Say hello to for me. I really enjoyed meeting you both. I thought it was a good conference. And sure had some great food!

I confess, I don't know about the Cellcept dosing, but I'll try to find something. I know we have some members who have taking it; hopefully they'll have some info on it.

What kind of workup has he had for that arm? Tests like a EMG, xrays, MRI? What kind of doctors has he seen for it?

replied that she has the "band" sensation; I think Rick also has that. I've not had it around my chest or abdomen, but I used to get it around my thighs. It felt like a blood pressure cuff was pumped up to high; just a really intense squeezing sensation. I don't have it anymore; maybe the Pred & other meds I took wiped out whatever was causing that feeling. It's possible to get sarcoid lesions in the spine, so I would assume that a "NS" would be possible for the same reason as the "MS hug."

You are correct about the description of pleurisy. The pain is associated with breathing, so it used to be treated by binding the chest tightly, with a towel, pillowcase or ace bandage. But I'm pretty sure that binding is no longer recommended. I'll try to find current recommendations.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis From: ebonywreh@...Date: Sat, 20 Oct 2007 04:21:02 +0000Subject: Has anyone experienced this?

Hi everyone. It was very nice meeting some of you at the Indy Conference. Rose, you were very sweet and gave us a ton of info. We have another question though. As some of you might know, has been off of his Cellcept for the past three - four weeks because of the insurance company. We were finally able to get it from the pharmaceutical company this week and he has started retaking it. However, in the last couple of weeks, he has started to get some symptoms again and I am a little worried. His arm pain is getting worse even though he is on Lyrica and other meds for nerve pain. Also, he has started having a band like sensation across his chest and stomach. After researching it a little bit, I found out that it is called "the ms hug" in some circles. Supposedly, MS patients sometimes get the sensation when a new lesion appears on the spinal cord. Does anyone here ever get that sensation?Lastly, he went to the doctor today for some pain, sometimes sharp, he was having in his chest. The doctor believes that he has pleurisy and has ordered a chest xray. Has anyone ever heard of this? It appears to be a viral inflammation of the wall between the lungs and the ribcage. I hope that it is that and not that the sarcoid is appearing in the lungs.One last thing, his neuro now wants him to work himself up to 2000mg of cellcept a day when before he was taking 1000mg. I am waiting for a response as to why he wants him to essentially double up. Is it just me or is that a big increase in dosage?We have an appt with Dr. Baughman next month so maybe he can also help with all of these questions that we are having. Thanks for all of your help.Ebony and Help yourself to FREE treats served up daily at the Messenger Café. Stop by today!

[Guest guest]

Ebony, I found some information on pleurisy. Some centers still do recommend binding the chest; this relieves pain because it decreases the movement of the chest. That can lead to more problems, as the person needs to take deep breaths & cough to prevent pneumonia. The best info I read is from the Merck Manual online. Here is the web address: http://www.merck.com/mmhe/sec04/ch052/ch052b.html

Here is an excerpt from that article; I think it covers the treatment options very well.

Treatment

The treatment of pleurisy depends on the particular cause. If the cause is a bacterial infection, antibiotics are prescribed. If the cause is a viral infection, no treatment is needed for the infection. If the cause is an autoimmune disease, such as systemic lupus erythematosus, treatment with corticosteroids often quickly cures the pleurisy.

A nonsteroidal anti-inflammatory drug (NSAID) (see Pain: Nonsteroidal Anti-Inflammatory Drugs) usually helps relieve the chest pain of pleurisy, regardless of its cause. Codeine and other opioids are stronger pain relievers, but they tend to suppress coughing, which is not a good idea because deep breathing and coughing help prevent lung collapse and subsequent pneumonia. Thus, a person with pleurisy is encouraged to breathe deeply and cough as soon as breathing becomes less painful. Coughing may be less painful if the person or a helper holds a pillow firmly against the part of the chest that hurts. Wrapping the entire chest in wide, nonadhesive elastic bandages may help relieve severe chest pain. However, binding the chest to reduce expansion during breathing increases the risk of lung collapse (atelectasis) and pneumonia.

I hope gets some relief from at least some of his symptoms.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis From: ebonywreh@...Date: Sat, 20 Oct 2007 04:21:02 +0000Subject: Has anyone experienced this?

Hi everyone. It was very nice meeting some of you at the Indy Conference. Rose, you were very sweet and gave us a ton of info. We have another question though. As some of you might know, has been off of his Cellcept for the past three - four weeks because of the insurance company. We were finally able to get it from the pharmaceutical company this week and he has started retaking it. However, in the last couple of weeks, he has started to get some symptoms again and I am a little worried. His arm pain is getting worse even though he is on Lyrica and other meds for nerve pain. Also, he has started having a band like sensation across his chest and stomach. After researching it a little bit, I found out that it is called "the ms hug" in some circles. Supposedly, MS patients sometimes get the sensation when a new lesion appears on the spinal cord. Does anyone here ever get that sensation?Lastly, he went to the doctor today for some pain, sometimes sharp, he was having in his chest. The doctor believes that he has pleurisy and has ordered a chest xray. Has anyone ever heard of this? It appears to be a viral inflammation of the wall between the lungs and the ribcage. I hope that it is that and not that the sarcoid is appearing in the lungs.One last thing, his neuro now wants him to work himself up to 2000mg of cellcept a day when before he was taking 1000mg. I am waiting for a response as to why he wants him to essentially double up. Is it just me or is that a big increase in dosage?We have an appt with Dr. Baughman next month so maybe he can also help with all of these questions that we are having. Thanks for all of your help.Ebony and Climb to the top of the charts!  Play Star Shuffle:  the word scramble challenge with star power. Play Now!

[Guest guest]

Hello Ebony and ,

Welcome to our Sarc Family! I am answering in response to your questions about Pleurisy. I have not had Pleurisy since I was diagnosed with NS, but I have had it crop up many times in the past. I used to get upper respiratory infections quite frequently and I started to get Pleurisy along with them. I never experienced pain in my chest, but it felt as if there was a knife stuck in my back, and I couldn't get comfortable no matter what I did. The doctors at that time put me on Ibuprofen (I believe 800mg) and had me lie in bed with a heating pad. It took a week before I felt better the first time, and since then I have had some flare ups that were never that bad, and Ibuprofen always did the trick. However, I don't recommend taking Ibuprofen without consulting your doctor about it interacting with the medications is already taking. I just wanted to let you know what worked for me in the past.

Good Luck!

in UT

>> Hi everyone. It was very nice meeting some of you at the Indy > Conference. Rose, you were very sweet and gave us a ton of info. > We have another question though. > > As some of you might know, has been off of his Cellcept for the > past three - four weeks because of the insurance company. We were > finally able to get it from the pharmaceutical company this week and > he has started retaking it. However, in the last couple of weeks, > he has started to get some symptoms again and I am a little > worried. > > His arm pain is getting worse even though he is on Lyrica and other > meds for nerve pain. > > Also, he has started having a band like sensation across his chest > and stomach. After researching it a little bit, I found out that it > is called "the ms hug" in some circles. Supposedly, MS patients > sometimes get the sensation when a new lesion appears on the spinal > cord. Does anyone here ever get that sensation?> > Lastly, he went to the doctor today for some pain, sometimes sharp, > he was having in his chest. The doctor believes that he has > pleurisy and has ordered a chest xray. Has anyone ever heard of > this? It appears to be a viral inflammation of the wall between the > lungs and the ribcage. I hope that it is that and not that the > sarcoid is appearing in the lungs.> > One last thing, his neuro now wants him to work himself up to 2000mg > of cellcept a day when before he was taking 1000mg. I am waiting > for a response as to why he wants him to essentially double up. Is > it just me or is that a big increase in dosage?> > We have an appt with Dr. Baughman next month so maybe he can also > help with all of these questions that we are having. Thanks for all > of your help.> > Ebony and >

[Guest guest]

When you are on an immunosupressant and then have to go off it-- as in this case, many times you end up in relapse. To hear that he is having more problems is not unusual. Sadly, the insurance carriers couldn't care less. One thing I would do is to make sure that when you are forced to change carriers, normally, the new carrier has to assume the treatment that was IN EffECT prior to the change.

They can't rewrite or disrupt the protocol that was already being done.

You can write to the DEPT OF INSURANCE, OR your states INSURANCE COMMISSIONER and let them know this is happening. Be sure to send a copy of your letter to your new carrier, letting them know that you are filing a formal complaint with the Dept of Insurance. This will sometimes get them to give in. They don't want the government getting involved.

It is not at all unusual for the sarcoidosis to be in the lungs-- and all around the lungs. It would be nice if he has pleursy-- that is easy to deal with-- just a 7 day pack of Solu-medrol. (Prednisone.) However, more than likely it is that there is so much systemic involvement, that his lungs are now being effected.

Prednisone is always the MD's first choice. Your fiance is already showing signs of multi-systemic and neurosarcoidosis. So he really needs a combination-- pred is great if it is just the lungs-- but when our bodies have shown signs in our eyes, our memory-- it is so important to get on one of the steroid sparing immunosupressants. Imuran, Methotrexate, Plaquenil, Enbrel, Humira, Arava are all good starting points.

The challenge with any of these meds is that you have to find a cocktail that works for you, and that will take time. Plaquenil is great for lungs, but doesn't seem to help with the arthritic pain caused by the sarc. Methotrexate is good for the body pain and mind involvement. Imuran helps with the systemic inflammation.

What they know now is that when you take away the immunosupressant, then the sarc generally comes back-- even more intensely.

WWW.arthritis .org is a great site for the drug info. It has the diferent catagories or anti-inflammatories, immunosupressants, Biologicals, and DMARDS. (Disease modifying antirheumatic drugs.) Check it out.

www.stopsarcoidosis.org is another great site that can give you info on systemic saracoidosis and treatment options.

As far as seeing a neurologist-- that would be a good idea-- that way they can make sure it is sarcoidosis and not one of the other auto-immune diseases. They still don't have specific tests for NS-- but by ruling out the other ones-- it gives them a better idea of what is going on.

Your MD's are thinking that NS is such a long shot-- that they aren't putting a lot of weight into his problems-- and they need to address them--now!!

Take care,

Tracie

NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

I could kiss all of you! I have been suffering with a tight band-like

sensation around my upper abdomen and difficulty breathing since

having pneumonia in August. My heart checked out fine. The doctors are

not sure what it is but suspected it was sarcoidosis-related. Then

your post about the MS hug cleared it up for me. I will mention it to

my doctors. Not sure what they can do about it besides the treatments

I am getting, but just figuring out the cause of the discomfort is

such a relief! Thank you, thank you, thank you!!!!!!

-

[Guest guest]

, anti-inflammatory meds help me.. Ibuprofen, Motrin or your doctor may can prescribe you with something prescription strength...

Re: Has anyone experienced this?

I could kiss all of you! I have been suffering with a tight band-likesensation around my upper abdomen and difficulty breathing sincehaving pneumonia in August. My heart checked out fine. The doctors arenot sure what it is but suspected it was sarcoidosis-related. Thenyour post about the MS hug cleared it up for me. I will mention it tomy doctors. Not sure what they can do about it besides the treatmentsI am getting, but just figuring out the cause of the discomfort issuch a relief! Thank you, thank you, thank you!!!!!!-

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.15.5/1084 - Release Date: 10/21/2007 3:09 PM

[Guest guest]

, we get such weird symptoms that sometimes we're afraid to tell the doctors. That's one of the benefits of this group; we can describe something without worrying that everyone will think we are nuts, or imagining things. And then the bonus: someone else has had the same thing! Eureka!

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: wendy_cidp@...Date: Mon, 22 Oct 2007 23:30:40 +0000Subject: Re: Has anyone experienced this?

I could kiss all of you! I have been suffering with a tight band-likesensation around my upper abdomen and difficulty breathing sincehaving pneumonia in August. My heart checked out fine. The doctors arenot sure what it is but suspected it was sarcoidosis-related. Thenyour post about the MS hug cleared it up for me. I will mention it tomy doctors. Not sure what they can do about it besides the treatmentsI am getting, but just figuring out the cause of the discomfort issuch a relief! Thank you, thank you, thank you!!!!!!- Boo! Scare away worms, viruses and so much more! Try Windows Live OneCare! Try now!

[Guest guest]

Hi Ebony , I think I know the "band" you are referring to. I have had severe asthma ever since I was a kid , and whenever I have had been having a hard time with it - having attacks, being on prednisone and having to use my nebulizer all the time. That band hits me around the bottom of my ribs and under my breasts and hurts so bad. I think it is from the difficulty of breathing for such a long amount of time. Debbie T. Co-Moderator at@... wrote: Hi Ebony.. I'm I'm not certain if I understand what sensation your talking about.. I get "banding" around my chest and rib area.. its like a squeezing sensation.. like a rubberband is tightening and releasing.. its quite

uncomfortable.. And we have some of the same symptoms as MS.. That's why they have a hard time distinguishing from MS/NS.. Has anyone experienced this? Hi everyone. It was very nice meeting some of you at the Indy Conference. Rose,

you were very sweet and gave us a ton of info. We have another question though. As some of you might know, has been off of his Cellcept for the past three - four weeks because of the insurance company. We were finally able to get it from the pharmaceutical company this week and he has started retaking it. However, in the last couple of weeks, he has started to get some symptoms again and I am a little worried. His arm pain is getting worse even though he is on Lyrica and other meds for nerve pain. Also, he has started having a band like sensation across his chest and stomach. After researching it a little bit, I found out that it is called "the ms hug" in some circles. Supposedly, MS patients sometimes get the sensation when a new lesion appears on the spinal cord. Does anyone here ever get that sensation?Lastly, he went to the doctor today for some pain, sometimes sharp, he was having in

his chest. The doctor believes that he has pleurisy and has ordered a chest xray. Has anyone ever heard of this? It appears to be a viral inflammation of the wall between the lungs and the ribcage. I hope that it is that and not that the sarcoid is appearing in the lungs.One last thing, his neuro now wants him to work himself up to 2000mg of cellcept a day when before he was taking 1000mg. I am waiting for a response as to why he wants him to essentially double up. Is it just me or is that a big increase in dosage?We have an appt with Dr. Baughman next month so maybe he can also help with all of these questions that we are having. Thanks for all of your help.Ebony and No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.15.1/1079 - Release Date: 10/19/2007 5:10

AM Debbie T.Co-Moderator __________________________________________________

[Guest guest]

Hi Ebony , I think I know the "band" you are referring to. I have had severe asthma ever since I was a kid , and whenever I have had been having a hard time with it - having attacks, being on prednisone and having to use my nebulizer all the time. That band hits me around the bottom of my ribs and under my breasts and hurts so bad. I think it is from the difficulty of breathing for such a long amount of time. Debbie T. Co-Moderator at@... wrote: Hi Ebony.. I'm I'm not certain if I understand what sensation your talking about.. I get "banding" around my chest and rib area.. its like a squeezing sensation.. like a rubberband is tightening and releasing.. its quite

uncomfortable.. And we have some of the same symptoms as MS.. That's why they have a hard time distinguishing from MS/NS.. Has anyone experienced this? Hi everyone. It was very nice meeting some of you at the Indy Conference. Rose,

you were very sweet and gave us a ton of info. We have another question though. As some of you might know, has been off of his Cellcept for the past three - four weeks because of the insurance company. We were finally able to get it from the pharmaceutical company this week and he has started retaking it. However, in the last couple of weeks, he has started to get some symptoms again and I am a little worried. His arm pain is getting worse even though he is on Lyrica and other meds for nerve pain. Also, he has started having a band like sensation across his chest and stomach. After researching it a little bit, I found out that it is called "the ms hug" in some circles. Supposedly, MS patients sometimes get the sensation when a new lesion appears on the spinal cord. Does anyone here ever get that sensation?Lastly, he went to the doctor today for some pain, sometimes sharp, he was having in

his chest. The doctor believes that he has pleurisy and has ordered a chest xray. Has anyone ever heard of this? It appears to be a viral inflammation of the wall between the lungs and the ribcage. I hope that it is that and not that the sarcoid is appearing in the lungs.One last thing, his neuro now wants him to work himself up to 2000mg of cellcept a day when before he was taking 1000mg. I am waiting for a response as to why he wants him to essentially double up. Is it just me or is that a big increase in dosage?We have an appt with Dr. Baughman next month so maybe he can also help with all of these questions that we are having. Thanks for all of your help.Ebony and No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.15.1/1079 - Release Date: 10/19/2007 5:10

AM Debbie T.Co-Moderator __________________________________________________

[Guest guest]

Hi, I have the same problem (banding). My doctors say it's the Sarc effecting a specific disc of my spine (forgot the number, I can find the info and be very specific if your interested). I just started Lyrica with hopes it might lessen the banding. It's been less than a week, way too soon to tell. Humidity and diet effects the banding the most. I have to avoid heavy meals and I can always tell when the rain is coming. Dr's suggest moving to a warmer, drier climate. The banding is not MS, it's caused by the Sarc. Get several scans of your spinal cord before starting new treatments. RickDebbie wrote: Hi Ebony , I think I know the "band" you are referring to. I have had severe asthma ever since I was a kid , and whenever I have had been having a hard time with it - having attacks, being on prednisone and having to use my nebulizer all the time. That band hits me around the bottom of my ribs and under my breasts and hurts so bad. I think it is from the difficulty of breathing for such a long amount of time. Debbie T. Co-Moderator at (AT) bellsouth (DOT) net wrote: Hi Ebony.. I'm I'm not certain if I understand what sensation your talking about.. I get "banding" around my chest and rib area.. its like a squeezing sensation.. like a rubberband is

tightening and releasing.. its quite uncomfortable.. And we have some of the same symptoms as MS.. That's why they have a hard time distinguishing from MS/NS.. Has anyone experienced this? Hi everyone. It was very nice meeting some of you at the Indy Conference. Rose, you were very sweet and gave us a ton of

info. We have another question though. As some of you might know, has been off of his Cellcept for the past three - four weeks because of the insurance company. We were finally able to get it from the pharmaceutical company this week and he has started retaking it. However, in the last couple of weeks, he has started to get some symptoms again and I am a little worried. His arm pain is getting worse even though he is on Lyrica and other meds for nerve pain. Also, he has started having a band like sensation across his chest and stomach. After researching it a little bit, I found out that it is called "the ms hug" in some circles. Supposedly, MS patients sometimes get the sensation when a new lesion appears on the spinal cord. Does anyone here ever get that sensation?Lastly, he went to the doctor today for some pain, sometimes sharp, he was having in his chest. The doctor believes that he

has pleurisy and has ordered a chest xray. Has anyone ever heard of this? It appears to be a viral inflammation of the wall between the lungs and the ribcage. I hope that it is that and not that the sarcoid is appearing in the lungs.One last thing, his neuro now wants him to work himself up to 2000mg of cellcept a day when before he was taking 1000mg. I am waiting for a response as to why he wants him to essentially double up. Is it just me or is that a big increase in dosage?We have an appt with Dr. Baughman next month so maybe he can also help with all of these questions that we are having. Thanks for all of your help.Ebony and No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.15.1/1079 - Release Date: 10/19/2007 5:10 AM Debbie T. Co-Moderator __________________________________________________

[Guest guest]

Hi, I have the same problem (banding). My doctors say it's the Sarc effecting a specific disc of my spine (forgot the number, I can find the info and be very specific if your interested). I just started Lyrica with hopes it might lessen the banding. It's been less than a week, way too soon to tell. Humidity and diet effects the banding the most. I have to avoid heavy meals and I can always tell when the rain is coming. Dr's suggest moving to a warmer, drier climate. The banding is not MS, it's caused by the Sarc. Get several scans of your spinal cord before starting new treatments. RickDebbie wrote: Hi Ebony , I think I know the "band" you are referring to. I have had severe asthma ever since I was a kid , and whenever I have had been having a hard time with it - having attacks, being on prednisone and having to use my nebulizer all the time. That band hits me around the bottom of my ribs and under my breasts and hurts so bad. I think it is from the difficulty of breathing for such a long amount of time. Debbie T. Co-Moderator at (AT) bellsouth (DOT) net wrote: Hi Ebony.. I'm I'm not certain if I understand what sensation your talking about.. I get "banding" around my chest and rib area.. its like a squeezing sensation.. like a rubberband is

tightening and releasing.. its quite uncomfortable.. And we have some of the same symptoms as MS.. That's why they have a hard time distinguishing from MS/NS.. Has anyone experienced this? Hi everyone. It was very nice meeting some of you at the Indy Conference. Rose, you were very sweet and gave us a ton of

info. We have another question though. As some of you might know, has been off of his Cellcept for the past three - four weeks because of the insurance company. We were finally able to get it from the pharmaceutical company this week and he has started retaking it. However, in the last couple of weeks, he has started to get some symptoms again and I am a little worried. His arm pain is getting worse even though he is on Lyrica and other meds for nerve pain. Also, he has started having a band like sensation across his chest and stomach. After researching it a little bit, I found out that it is called "the ms hug" in some circles. Supposedly, MS patients sometimes get the sensation when a new lesion appears on the spinal cord. Does anyone here ever get that sensation?Lastly, he went to the doctor today for some pain, sometimes sharp, he was having in his chest. The doctor believes that he

has pleurisy and has ordered a chest xray. Has anyone ever heard of this? It appears to be a viral inflammation of the wall between the lungs and the ribcage. I hope that it is that and not that the sarcoid is appearing in the lungs.One last thing, his neuro now wants him to work himself up to 2000mg of cellcept a day when before he was taking 1000mg. I am waiting for a response as to why he wants him to essentially double up. Is it just me or is that a big increase in dosage?We have an appt with Dr. Baughman next month so maybe he can also help with all of these questions that we are having. Thanks for all of your help.Ebony and No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.15.1/1079 - Release Date: 10/19/2007 5:10 AM Debbie T. Co-Moderator __________________________________________________

[Guest guest]

Thanks everyone. Yes, I know it's not MS, it is just frequently

found in patients with MS. The Sarc working on a disc makes sense

though. It has gotten better over the last couple of days so

hopefully everything will be fine. By the way, we figured out that

the insurance will cover the home visit and the solumedrol. It is

the equipment and supplies that aren't covered.

Ebony

> Hi Ebony.. I'm I'm not certain if I understand what

sensation your talking about.. I get " banding " around my chest and

rib area.. its like a squeezing sensation.. like a rubberband is

tightening and releasing.. its quite uncomfortable.. And we have

some of the same symptoms as MS.. That's why they have a hard time

distinguishing from MS/NS..

> Has anyone experienced this?

>

>

> Hi everyone. It was very nice meeting some of you at the Indy

> Conference. Rose, you were very sweet and gave us a ton of info.

> We have another question though.

>

> As some of you might know, has been off of his Cellcept for

the

> past three - four weeks because of the insurance company. We were

> finally able to get it from the pharmaceutical company this week

and

> he has started retaking it. However, in the last couple of weeks,

> he has started to get some symptoms again and I am a little

> worried.

>

> His arm pain is getting worse even though he is on Lyrica and

other

> meds for nerve pain.

>

> Also, he has started having a band like sensation across his chest

> and stomach. After researching it a little bit, I found out that

it

> is called " the ms hug " in some circles. Supposedly, MS patients

> sometimes get the sensation when a new lesion appears on the

spinal

> cord. Does anyone here ever get that sensation?

>

> Lastly, he went to the doctor today for some pain, sometimes

sharp,

> he was having in his chest. The doctor believes that he has

> pleurisy and has ordered a chest xray. Has anyone ever heard of

> this? It appears to be a viral inflammation of the wall between

the

> lungs and the ribcage. I hope that it is that and not that the

> sarcoid is appearing in the lungs.

>

> One last thing, his neuro now wants him to work himself up to

2000mg

> of cellcept a day when before he was taking 1000mg. I am waiting

> for a response as to why he wants him to essentially double up. Is

> it just me or is that a big increase in dosage?

>

> We have an appt with Dr. Baughman next month so maybe he can also

> help with all of these questions that we are having. Thanks for

all

> of your help.

>

> Ebony and

>

>

>

>

> ---------------------------------

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.488 / Virus Database: 269.15.1/1079 - Release Date:

10/19/2007 5:10 AM

>

>

>

>

> Debbie T.

> Co-Moderator

> __________________________________________________

>

[Guest guest]

Hi, If anyone finds a drug that helps with the "banding" pain please let me know. Thanks & feel well everyone RickEbonyWreh wrote: Thanks everyone. Yes, I know it's not MS, it is just frequently found in patients with MS. The Sarc working on a disc makes sense though. It has gotten better over the last couple of days so hopefully everything will be fine. By the way, we figured out that the insurance will cover the home visit and the solumedrol. It is

the equipment and supplies that aren't covered. Ebony> Hi Ebony.. I'm I'm not certain if I understand what sensation your talking about.. I get "banding" around my chest and rib area.. its like a squeezing sensation.. like a rubberband is tightening and releasing.. its quite uncomfortable.. And we have some of the same symptoms as MS.. That's why they have a hard time distinguishing from MS/NS..> Has anyone experienced this?> > > Hi everyone. It was very nice meeting some of you at the Indy > Conference. Rose, you were very sweet and gave us a ton of info. > We have another question though. > > As some of you might know, has been off of his Cellcept for the > past three - four weeks because of the insurance company. We were > finally able to get it from the pharmaceutical company this week and > he has started retaking it. However, in the last couple of weeks, > he has started to get some symptoms again and I am a little > worried. > > His arm pain is getting worse even though he is on Lyrica and other > meds for nerve pain. > > Also, he has started

having a band like sensation across his chest > and stomach. After researching it a little bit, I found out that it > is called "the ms hug" in some circles. Supposedly, MS patients > sometimes get the sensation when a new lesion appears on the spinal > cord. Does anyone here ever get that sensation?> > Lastly, he went to the doctor today for some pain, sometimes sharp, > he was having in his chest. The doctor believes that he has > pleurisy and has ordered a chest xray. Has anyone ever heard of > this? It appears to be a viral inflammation of the wall between the > lungs and the ribcage. I hope that it is that and not that the > sarcoid is appearing in the lungs.> > One last thing, his neuro now wants him to work himself up to 2000mg > of cellcept a day when before he was taking 1000mg. I am waiting > for a response as to why he wants him to

essentially double up. Is > it just me or is that a big increase in dosage?> > We have an appt with Dr. Baughman next month so maybe he can also > help with all of these questions that we are having. Thanks for all > of your help.> > Ebony and > > > > > ---------------------------------> > No virus found in this incoming message.> Checked by AVG Free Edition. > Version: 7.5.488 / Virus Database: 269.15.1/1079 - Release Date: 10/19/2007 5:10 AM> > > > > Debbie T.> Co-Moderator> __________________________________________________>

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Rick.. Anti-inflammatory drugs such as insaids, ibuprofen helped me with mine.. till they got me on my current treatment.. I still take a anti-inflammatory from the rheumatologist called relafen that I'm not sure that its working untill I don't take it then my life is misery.. Talk to your doctors and see what they suggest.. they should know what "banding" is.. if not.. tell them.. Explain it like its a squeezing sensation around your ribcage that is very uncomfortable and actually painful..and ask what you should take.. and go from there..

Has anyone experienced this?> > > Hi everyone. It was very nice meeting some of you at the Indy > Conference. Rose, you were very sweet and gave us a ton of info. > We have another question though. > > As some of you might know, has been off of his Cellcept for the > past three - four weeks because of the insurance company. We were > finally able to get it from the pharmaceutical company this week and > he has started retaking it. However, in the last couple of weeks, > he has started to get some symptoms again and I am a little > worried. > > His arm pain is getting worse even though he is on Lyrica and other > meds for nerve pain. > > Also, he has started having a band like sensation across his chest > and stomach. After researching it a little bit, I found out that it > is called "the ms hug" in some circles. Supposedly, MS patients > sometimes get the sensation when a new lesion appears on the spinal > cord. Does anyone here ever get that sensation?> > Lastly, he went to the doctor today for some pain, sometimes sharp, > he was having in his chest. The doctor believes that he has > pleurisy and has ordered a chest xray. Has anyone ever heard of > this? It appears to be a viral inflammation of the wall between the > lungs and the ribcage. I hope that it is that and not that the > sarcoid is appearing in the lungs.> > One last thing, his neuro now wants him to work himself up to 2000mg > of cellcept a day when before he was taking 1000mg. I am waiting > for a response as to why he wants him to essentially double up. Is > it just me or is that a big increase in dosage?> > We have an appt with Dr. Baughman next month so maybe he can also > help with all of these questions that we are having. Thanks for all > of your help.> > Ebony and > > > > > ---------------------------------> > No virus found in this incoming message.> Checked by AVG Free Edition. > Version: 7.5.488 / Virus Database: 269.15.1/1079 - Release Date: 10/19/2007 5:10 AM> > > > > Debbie T.> Co-Moderator> __________________________________________________>