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Fatigue

Sunday, April 29th, 2007

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Posted in Uncategorized, My Life with MS, Copaxone /Novantrone Combo, Relaps/Remitting MS, Secondary Progressive, Multiple Sclerosis Treatmentsw | Comments Off

Injection Site Follow Up

Wednesday, March 28th, 2007

My injection sites were horrible.  I have a pretty high tolerance for pain as i’m sue most people living with chronic illness do.  But the sites were not going away and keeping me up at night.  It felt like I was being repeatedly stabbed with needles.

I called Shared Solutions and spoke to a nurse.  She told me to heat the injection site for 5 minutes, then self inject, don’t ice, but put pressure on the site for exactly two minutes.

This helped SO much! The nurse explained that when you self-inject, you can go in at a 45 degree angle whereas with the AutoJect, it’s has to be a 90 degree angle.

I find that I have a lot more control over the injection doing it myself.  The nurse also rcommended that I massage the site 48 hours after, and NOT BEFORE!

Also, she was adament about not icing the site after. 

I personally have found that this has helped practically eliminate the injection site reactions, and made Copaxone a much more tolerable treatment for my MS.  Thank you to the Shared Solutions Nurses!


Posted in Uncategorized, My Life with MS, Copaxone /Novantrone Combo, Relaps/Remitting MS, Injection Site Reactions | No Comments »

MRI’s & My Leg

Wednesday, March 28th, 2007

So, last Thursday I went for a Brain and Spinal Scan with and without contrast.

An MRI with and without contrast basically means that they take the MRI pics, inject a dye in your vein - (not painful, but you get a slight metallic taste in your mouth) - and then they take more pictures.

My Neurologist wanted to take both an MRI of my brain and my spine.

I should have started to wonder when everyone I spoke to about scheduling the MRI’s said, “Are you SURE you want to schedule BOTH at the same time?!”

Well, of course I did… Why come back twice? I’ve had a ton of MRI’s, so by now, it’s almost a nice little vacation from my 2 little one’s! They did tell me that I would be in the MRI for a while, but really, how long could it take?

I would highly recommend to anyone that has to do both that they schedule them separately! It was a terribly long time. It wasn’t the “tube” that bugged, but you have to lie perfectly still the WHOLE time, and the spine takes the longest.

By the time it was over, I literallly was crippled from the pain. My left leg was completely gone, and I had horrible flashbacks of when I lost my legs the last time.

I sat there for 20 minutes praying for my leg to come back.

It did, though not completely, but enough to get me out of there and to pick up my kids. It was really scary, and unfortunately, by Sunday, I had lost my left leg completely, and I am now using the electric wheelchair in the house. I can’t even “wall walk.”

I have been progressing for some time now, and just saw my neurologist a couple of weeks ago- hence the new set of MRI’s.

The stinky part is that my neuro can’t do anything for me. Because I am on chemo among countless other drugs, my immune system can’t handle steroids. Nonetheless, I am seing him tomorrow morning for my poor left leg as well as something weird in my arm.

I had a pulse of chemo on February 16, and now, the veins in my left arm are bulging, hard, and painful.

I called my Oncologist, and their first concern was a blood clot. More good news! Yesterday, they did a doppler, or ultrasound, and, no clot! Next was an appointment with a Physician’s Assistant as my Oncologist is out of town.

I’ve been running a fever, and my blood counts are crap because of the chemo. Therefore, he didn’t feel comfortable prescribing an antibiotic as it would drive down my blood counts even further.

As far as my veins, they are done - at least in my left arm. Apparently, this sort of thing happens from either overuse of the veins, a reaction to the actual chemo, or, in my case probably, both.

The PA knew that I was seeing my neurologist tomorrow, so he sort of “passed the buck.” But my neurologist treats my MS. He treats it well, but he’s a neurologist. He won’t even give me steroids in fear of my blood counts let alone an antibiotic. I do have a follow up with my Oncologist on April 11. Until then, the PA told me to take 600mg of Motrin 3 times a day for my arm. I suppose if he felt I would become septic he wouldn’t have sent me home! HA!

Posted in Uncategorized, My Life with MS, Copaxone /Novantrone Combo, MS & The Bizzare! | No Comments »

Yes, I am still here

Monday, March 26th, 2007

My my, it has been a while.  Unfortunately, I wasn’t doing well emotionally or physically.  I promise to write more on that another time.

I just had to check out for a bit…  But not permanently!

I started to progress, and my symptoms have gotten worse.

What I thought was a cure turned out to be just a treatment.  A viable treatment, but just a treatment nonetheless.  It blew the wind out of my sails to say the least.

In addition, we had some renovations done on the house, and I am still recovering.  I just had an MRI of my brain and spine last Thursday, we will see.  For now, I am sticking with my “viable treatment for MS” as my terrific neuro put it.


Posted in Uncategorized, My Life with MS, Copaxone /Novantrone Combo | No Comments »

Chemo

Tuesday, November 7th, 2006

I had my chemo, and the typical side effects as well. But four days out, I’m felling pretty good.

I am alert when I wake in the morning, but tire easily, and I am having a bit of MS pain. I always get it after chemo or during exacerbations.

Very nauseaus. Happy Halloween!

Posted in Uncategorized, My Life with MS, Copaxone /Novantrone Combo | No Comments »

Rigors? ADR? (Adverse Drug Reaction)

Monday, November 6th, 2006

Saturday night, about an hour after I took my shot, I started to get really cold.  I took my temperature, and it was 97.0.   I got into some warmer P.J.’s, and by the time I got back to the kitchen table, i was shivering and shaking.

The shaking quickly turned into convulsions.  The muscles behind my shoulders and up the sides of my neck cantracted, and the pain was excrutiating.

The soles of my feet and the palms of my hands got pins and needles and then went numb.  Next was my face.  I had trouble breathing, like my throat was being strangled.

After 15 minutes of this episode being severe, my husband called 911.  I though I was having a seizure, though I know little about them.  By the time EMS arrived, it was starting to subside.  My pulse was 165, my blood pressure was 94/52.  They stayed as I described the experience, and by the time I was through, I was fine.  My pulse was 96, and blood pressure 104/67 - I am always 110/70.

I decided to opt out of an ER visit at 11:00 pm on a Saturday night.

After speaking to my I.C.U. nurese friend and my neuro, it was one of two things.  Rigors or , I nicked a vein when I gave myself the shot.

Either way, it was what they call an Adverse Drug Reaction or ADR.  It’s not an allergic reaction - apparently there’s a difference.  

But that’s great news because it means I can stay on Copaxone!

My neuro is giving me an anti-hystemine to “pre-medicate” - take the pill before the shot, and hopefully it will prevent it from happening again!

Posted in Uncategorized, My Life with MS, Copaxone /Novantrone Combo, MS & The Bizzare! | No Comments »

Injection Site Reactions

Monday, October 23rd, 2006

I am on Copaxone, and the injection sites are horrible.  I tried using hydrocortisone cream - prescription strength, essential oils, icing it - it does help immediately after the injection.

 I also heat the injection spot 5-10 minutes with the Herbal Heating Pad from www.bathandbodyplace.com , and the Healing Balm is the only thing that soothes the injection site.

I know I am plugging the site admittedly for the Multple Sclerosis Mobiliy Foundation , but these products have honestly been helpful to me for years, even when I was on Betaseron.

My husband and I are donating 100% of ALL profits from the site  to the MSMF.  We are determined to make people mobile.

We guarantee all products, and the Organza Gift Sets are the perfect gift for EVERYONE.  Plus, you are supporting a good cause too!  Please check it out! www.bathandbodyplace.com Thanks!

Posted in Uncategorized, My Life with MS, Multiple Sclerosis Mobility Foundation, Copaxone /Novantrone Combo, Bath and Body Place, Betaseron, Injection Site Reactions, MS & The Bizzare! | No Comments »

Saw the Docs…

Thursday, October 19th, 2006

So, yesterday I saw both my nerologist and my oncologist.  I saw my neuro first, and he strongly felt that I should go througha fourth pulse of Novantrone for two main reasons.

First, he felt that with my MS acting up the closer I got to my next pulse, I still needed Novantrone.

Second, and a very good point, I thought, was that I “I now had six weeks of the Copaxone in me, and with a big, fresh pulse of Novantrone, it would hopefully ’shock’ my system out of having MS - so to speak.”

Needles to say, I am going to get the next dose of chemo on the 27th.

Posted in Uncategorized, My Life with MS, Copaxone /Novantrone Combo | No Comments »

Seeing All The Docs

Tuesday, October 17th, 2006

So, tomorrow, I see my neurologist first, then my oncologist later on. I’m about 33 shots in.  The last time I spoke to my neuro, we had a difference of opinion.  I am due for more Novantrone on October 27.  I didn’t want to take it and have an MRI in November.

He wanted me to have the fourth pulse, and do an MRI in January/February.

The improvement is remarkable, without a doubt.  But I still do much better when I take my other MS meds.  I’ve had a couple ecacerbations of spasticity, and the tizanadine and baclofen have been working on an “as needed” basis.

It’s mostly the pain and fatigue that get to me, and I definitely have my limits.  I am still taking Lyrica  and amphetamines regularly.

I find that these mini exacerbations are directly linked to how much I push myself, and the symptoms last at most 2 days, including the day that I pushed it.  So tomorrow, I am going in with an open mind.  My husband wants me to take the fourth pulse as well.

Then, in the afternoon, I see my oncologist.  Between the two, we should be able to make a decision.

Posted in Uncategorized, My Life with MS, Copaxone /Novantrone Combo | No Comments »

Contacted Clinical Trial for Copaxone/Novatrone

Wednesday, October 11th, 2006

I contacted the clinical trials department at Teva today. I got the information from www.clinicaltrials.gov. I spoke with a very nice woman who explained to me a bit about clinical trials. For instance, the Copaxone/Novantrone trial is in Phase IV, the final stage before it is submitted to the FDA for approval.

She said that it sometimes takes years before the FDA makes it’s decision, and it is only then that the data is released.

Okay, fine… But they managed to approve Tysabri rather quickly. Just saying… She was unable to get me in touch with the director fo clinical trials for Teva, the lady managing the staudy, but she took a message from me and said that she would have my local Teva rep call me. I haven’t heard anything yet, so I plan on calling the clinical trials department again soon.

I don’t know if it was a “slip,” or if this is public information, but she did say that , “Teva is about to start the same Copaxone/Novantrone combo therapy in people with relapse/remitting MS.”

This is, needless to say, amazing news. It is, as far as I know, the closest thing we are getting to an actual cure. This came about because she was kind enough to take the time to talk to me and answer a few questions I had. I asked her why the study says that it is for R/R MS when the FDA has only approved the use of Novantrone for secondary progressive. She explained that the FDA has only approved the use of Copaxone in RRMS, and, therefore, they could only “accept RRMS” with the use of Copaxone with Novantrone, knowing full well that those on Novantrone were not RR.

Basically a semantics game with the FDA trials, but that is what led to her telling me about Teva doing trials with the combo therapy in RRMS patients. Very exciting news!


Posted in Uncategorized, My Life with MS, Copaxone /Novantrone Combo, Relaps/Remitting MS | No Comments »

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