[TMIC] Update Newbie Inquiry
Good evening Group,
I'm Newbie Michelle from Bothell, WA who was just diagnosed several weeks ago with MS. 9/10 I awoke to the numbness again in my legs only to be hospitalized two days later. Not walking without assistance the symptoms only increased throughout the week. 2000 I was diagnosed with TM after an attack with all the same symptoms but recovered with little limitations. Now just finishing finally my prednisone/steroids I am improving daily. Now walking again on my own just a little wobbly at times ;-) and muscles are strengthening. My hands are still asleep with pins and needles though due to my lesion being at C5 this time whereas before it was T5-T7. I know that I am fortunate to be recovering again and walking on my own again. I am grateful and blessed. The doctors want to put me on Copaxone (daily injection). I wanted to ask if anyone is on this, their experience with it and if insurance covers this medication. I received a letter from Shared Solutions, which is through PPARX (Partnership for Prescription Assistance) who stated that insurance companys did not cover this. We currently do not unfortunately have medical insurance and this prescription is $1,300 to $1,500 a month. OUCH! Who can afford that! We are applying for PPARX assistance of course. Also has any MSrs out there discovered any successful alternative treatments. Is Copaxone my only option? {sigh} Thanks!!!
Michelle
Bothell, WA
TM2000 to MS2006
[TMIC] Re: tmic-digest Digest V2006 #228
R
[TMIC] Re: tmic-digest Digest V2006 #228
SANDY I AM SORRY TO HEAR THAT TERRY IS HAVING SO MANY PROBLEMS. I KNOW IT MUST BE SO PAINFUL.WELL YOU GO ON YOUR SHORT VACATION AND HAVE A BALL. I KNOW YOUR A BUSY LADY. I SAW PICS OF ONE OF THE BABIES BUT NOT THE NEW ONE.WHEN YOU HAVE A CHANCE I WILL SEND YOU MY NEW GRANDSON IF DAN EVER HOOKS UP MY SCANNER, MY DIGITAL CAMERA BROKE I NEED TO GO GET ONE. TELL TERRY HI AND LET US KNOW HOW HE IS DOING AND WHEN HIS SURGERY IS. MY PRAYERS OR WITH YOU! PAM
Re: [TMIC] Neuro visit pain questions
I just wanted to thank you for that post, Rob. I appreciated everything you said there, and I agree. Barbara H. http://barbarah.wordpress.com/ In a message dated 10/10/2006 5:38:43 PM Eastern Standard Time, [EMAIL PROTECTED] writes: It is very difficult to truly talk about TM considering no twoof us are effected in the same way. We all have similar conditions butthe degree of the condition is never similar. Of course a large elementis where the lesion is on the spine and probably the size of the lesion.Many TM'rs talk of pain, and I do not. I have "discomfort" 24/7. Thenumbness, pins and needles and banding are always there. Some days arebetter than others but I have major discomfort always. I saw Dr. Kerrlast week for my annual evaluation (my seventh in a row)and I asked himif I was doing better than many others due to the extent TM hit me orbecause I have exercised and worked so hard to be as good as I can. Hisanswer was both. Exercise is very important if for no other reason thanto not go backwards and for our gereral good health. I also asked him ifpatients diagnosed with TM have a shorter life span (considering howhard we work to do the simplest tasks) and hios answer was no. I guess Iam one of the "lucky ones". I can walk without a cane, although not verylong or very far. I have been able to work fulltime the past 9 years.And I push myself to not let TM stop me from almost anything (with theexception of athletics). I try to never feel sorry for myself and Icontinue to exercise everyday almost to the point of exhaustion. I willnot give in to this condition. I am quite certain after seeing Dr. Kerrthat the cure is years not decades away. I hope the people who have themost severe cases especially the children will see a cure first. If Ihave to live with my problem longer or not be cured at all then so beit. To me life is still good anhd TM will not change that for me. When I read many of the e mails I can feel the frustration andbitterness. I believe many who write are not able to work and thereforehave to deal with the condition minute to minute.I who work, am able toforget it until I get home and then give in to the condition. I do notconsider unsubscribing due to anything anyone says. I glance quickly atevery e mail and if it is not pertinent I just delete...which reallytakes less than a second. If it is pertinent I reply directly to theperson and not the group. I reply only to the group when I think itpertains to most if not all. As always having grown up in Brooklyn NY I tend to ramble. But aday does not go by where I don't pray for all of us. Let's just all hangin there and help eachother and especially try to help the newcomer whomis normally so confused and afraid.Love to all!Rob in New Jersey
Re: [TMIC] Newbies, update, etc.
Hope Terry's surgery goes well with a full and uneventful recovery. Enjoy your trip -- it sounds lovely! Barbara H. http://barbarah.wordpress.com/
Re: [TMIC] HELP WITH UNSUBSCRIBING..and WELCOME NEWBIES A QUESTION
Hi Jude ~ Please don't feel badlyI think we all feel "twitchy" at times and sometimes wish we could take back something we said. I know I have...! We all just need to forgive each otherand ourselveson those days. I so hope things will improve for you Jude.. you are a good person and you don't deserve what you are going through right now. If you are new here..welcome to our family!! You have come to the right place. Ask anything you like.someone will be more than happy to answer any of your questions. As Bob Cook said, "Come on in...the water is fine." Bob, I loved your dinner table analogy...that was great! :-) Sometimes when I read your letters to the list I think you missed your calling.you should have been a writer. Some of your letters are amazing...! Sandy.I have a paraplegic friend that went through the shoulder surgery a while back and he is doing great. Once again he is able to wheel his wheelchair down his boat ramp and go fishing. Make sure Terry keeps his shoulder immobilized just like his doc says...that's the really important part. Bring warm clothes when you visit the Sierraswe have been getting snow on the mountain tops! I have a question about pain meds while I'm here. have any of you regretted switching from Neurontin to Lyrica...? Does the Lyrica help you with the burning pain...? Every time I try to decrease my Neurontin the burning pain gets so bad I have to keep on taking it. Thanks. Love to all, Lynn
Re: [TMIC] Sudden Onset
I did have the spinal angiogram done while I was in acute care. Although it was 10 years ago, my situation was similar in that they were trying to rule out any vascular disease or blockage. It's basically similar to a cardio-cath (except they look at your spine instead). Still have the scar from the 1 cm incision, but not the worst thing I've ever been through. My onset was sudden, within 10 to 15 minutes after that stabbing pain in my back I felt pins needles in my butt, which crawled down my legs and up my torso. I thought it was a pinched nerve, so I lay down and fell asleep. I woke up to intense neuropathic pain (to the point where even a lightweight sheet was unbearable). Called 911 then and (after 3 different ERs that were all overcrowded and couldn't take me) I was started on the IV steroids and the neverending series of tests. This summer I had a small relapse and all the testing for MS done, but came back negative. Still get scared any time I feel a buzzing or pain or numbness that isn't what I would consider normal. Take care, Terry from New Jersey Carol E wrote: Hello to all, I have been rather quiet lately, hoping to be able to write you all and tell you that I have a new diagnosis. But I can't do that YET! I definitely think it is good to reach out and ask for everyone's opinions, help and support. And that is what I am doing right now. *I was diagnosed with TM in June 2005*. After what was thought to be 2 or 3 relapses within 1 year, my neuro thought I might have MS. After a repeat brain MRI and a Vision Evoked Response Test, which both were negative for MS, he discussed my case with 2 of his colleagues. One said I have MS and to start me on drugs right away and the other one said I did not have MS and not to start me on drugs. When I asked my neuro which side of the fence he was on, he said he liked to know what he was treating and with me he didn't know. I went to see Dr. Kerr this past August. He was very emphatic that I did not have MS and he thought it was doubtful that I had TM. Since I had coronary artery bypass surgery about 9 years ago, he was leaning toward possibly of vascular disease in my back, ie, maybe a blockage in my vessels in my spine leading to my lower extremities. So...back home I came to have more testing. He sent a letter to my local doctor, outlining his suggested test. My local doctor is very slowly going through these tests. To date, I have had only 2 of them; the ultrasound of the descending aorta and an MRA of the spine. (I had never heard of an MRA) Both of which are negative. So the *next test is a spinal angiogram.* _*Has anyone had this performed?*_ *My **symptoms began* with a slight low back pain while bending over the bathtub to give my granddaughter a bath. After that, she went to sleep in her swing, and I napped on the sofa. When I awoke about 1 hour later, my right leg had an intense needles and pins feeling from the toes up to the knee. Within in 1 hour, this needles and pins feeling progressed up to my hip. I went home to bed and the next morning I could not move my right leg. I had to lift it out of bed. I had only slight tingling in my left toes and that was all on my left side. *Now 16 months later*, my left leg has decreased sensitivity and slight banding, but I have good muscle control. I remember complaining to my doctor about a backache 2 months prior to the onset of this. He ordered an x-ray of my back, which was negative. I also remember around this same time, my bottom having a needles and pins feeling when I sat in my office chair. I just laughed it off thinking I needed to get off my butt and go out and make some sales calls (to doctors no less). My local doctors said the pain from giving the baby a bath and these other things have nothing to do with my current problem, TM or whatever! Oh, one last thing I found interesting. Dr. Kerr said my spinal tap that I had while in the hospital June 2005 was negative for TM. So could someone explain why my doctors continued with a diagnosis of TM? Carol in Culver, IN Living in limbo, but sure can't do it! TM T8-T10 (maybe) - Original Message - *From:* Robert Pall mailto:[EMAIL PROTECTED] *To:* [EMAIL PROTECTED] mailto:[EMAIL PROTECTED] ; [EMAIL PROTECTED] mailto:[EMAIL PROTECTED] ; TMIC-LIST@eskimo.com mailto:TMIC-LIST@eskimo.com *Sent:* Monday, October 09, 2006 8:36 AM *Subject:* RE: [TMIC] Sudden Onset My TM started as a feeling of first my right leg going numb, followed about an hour later with my left leg doing the same. In all it took less than 3 hours for me to lose all sensation below my waist. Even though it is over 9 years ago I cannot recall any pain whatsoever. In fact all of my discomfort started months later when some feeling returned. Unfortunatley the feeling that returned was pins and needles, numbness, and
Re: [TMIC] Update Newbie Inquiry
Hi Michelle,
In regards to your question, "Is
Copaxone my only option?" Please take a look at the
followingwebsite. It does an excellent job of comparing the MS
drugs. Hope it will help you. Sorry that I don't have any answers
for you regarding prescription assistance.
http://www.nationalmssociety.org/Brochures-Comparing.asp
Carol in Culver, IN
- Original Message -
From:
[EMAIL PROTECTED]
To: tmic-list@eskimo.com
Sent: Wednesday, October 11, 2006 2:25
AM
Subject: [TMIC] Update Newbie
Inquiry
Good evening Group,I'm Newbie Michelle
from Bothell, WA who was just diagnosed several weeks ago with MS. 9/10
I awoke to the numbness again in my legs only to be hospitalized two days
later. Not walking without assistance the symptoms only increased
throughout the week. 2000 I was diagnosed with TM after an attack with
all the same symptoms but recovered with little limitations. Now just
finishing finally my prednisone/steroids I am improving daily.
Now walking again on my own just a little wobbly at times ;-) and muscles are
strengthening. My hands are still asleep with pins and needles though
due to my lesion being at C5 this time whereas before it was T5-T7. I
know that I am fortunate to be recovering again and walking on my own
again. I am grateful and blessed. The doctors want to put me on
Copaxone (daily injection). I wanted to ask if anyone is on this, their
experience with it and if insurance covers this medication. I received a
letter from Shared Solutions, which is through PPARX (Partnership for
Prescription Assistance) who stated that insurance companys did not cover
this. We currently do not unfortunately have medical insurance and this
prescription is $1,300 to $1,500 a month. OUCH! Who can afford
that! We are applying for PPARX assistance of course. Also has any
MSrs out there discovered any successful alternative treatments. Is
Copaxone my only option? {sigh} Thanks!!!
MichelleBothell, WATM2000 to MS2006
Re: [TMIC] Update Newbie Inquiry
Michelle! Hello Again,
I was just looking over the website I sent you,
and guess WHAT? There is information listed on it about Industry-Sponsored Sites for Patient Information and/or Financial
Assistance. You'll find it about half way down the page.
:)
Carol in Culver
- Original Message -
From:
[EMAIL PROTECTED]
To: tmic-list@eskimo.com
Sent: Wednesday, October 11, 2006 2:25
AM
Subject: [TMIC] Update Newbie
Inquiry
Good evening Group,I'm Newbie Michelle
from Bothell, WA who was just diagnosed several weeks ago with MS. 9/10
I awoke to the numbness again in my legs only to be hospitalized two days
later. Not walking without assistance the symptoms only increased
throughout the week. 2000 I was diagnosed with TM after an attack with
all the same symptoms but recovered with little limitations. Now just
finishing finally my prednisone/steroids I am improving daily.
Now walking again on my own just a little wobbly at times ;-) and muscles are
strengthening. My hands are still asleep with pins and needles though
due to my lesion being at C5 this time whereas before it was T5-T7. I
know that I am fortunate to be recovering again and walking on my own
again. I am grateful and blessed. The doctors want to put me on
Copaxone (daily injection). I wanted to ask if anyone is on this, their
experience with it and if insurance covers this medication. I received a
letter from Shared Solutions, which is through PPARX (Partnership for
Prescription Assistance) who stated that insurance companys did not cover
this. We currently do not unfortunately have medical insurance and this
prescription is $1,300 to $1,500 a month. OUCH! Who can afford
that! We are applying for PPARX assistance of course. Also has any
MSrs out there discovered any successful alternative treatments. Is
Copaxone my only option? {sigh} Thanks!!!
MichelleBothell, WATM2000 to MS2006
