Hope is in the air.

October 27, 2015October 27, 2015 Tracy4 Comments

I’m finally back to seeing my neurologist on a regular basis. Last month we decided to have me re-fitted for AFO braces to stabilize my ankles. [foot drop]

I was fitted for both ankles yesterday. While I am unable to walk, we are hoping these braces will help me to stand up using my sit-to-stand. I have not been able to stand due to my foot drop[s] and weakness in my knees and hips. I am hoping for a good outcome. I know it will take some time and a lot of pain, but even the pain will be worth it to me. It was tough fitting me for the braces as my feet literally just hang down. It took some serious stretching and pain to get my feet casted. But, WE DID IT!!

This month my neuro and I decided I will start Tysabri infusions again.

I started Tysabri back in 2011. My blog mentioning it is here. After some time on it I contracted hepA [medicinal] from the medication[s] I was taking. This time I am going to be very careful of the other meds I take while on Tysabri. I will be staying away from acetaminophen and any other med that may cause organ damage. I am being tested for the John Cunningham Virus (JCV) first, as JCV could lead to progressive multifocal leukoencephalopathy (PML)—that usually leads to death or severe disability. I had no issues with this 4 years ago and am hoping I have none this time around. After my AFO fittings were finished, I went by my neuro’s office and I signed all the paperwork to get the process moving along. I will try anything to help myself as I truly have nothing to lose.

Last time I ended up having a power port inserted in my chest for easier infusions, as my veins are shot. I am so glad I did not have it removed when they stopped the infusions. Maybe, somewhere inside of me I knew that one day I’d give it a go again.

I’m trying to keep a positive attitude about all of this. I know I will still have my nightly cry, but I have to get it out somehow. Thankfully, my caregiver and BFF Steph, never lets me wallow for too long.

I GOT THIS!!

Fear · Hope · Medical · Multiple Sclerosis · Ramblings · RANDOM

My Neurologist appt. 5-26-2011

May 27, 2011May 27, 2011 Tracy7 Comments

[re-post from fab40]

Well, it’s official, my MS has progressed faster than my neuro would like.

frown

There are no real medications out there yet for primary progressive ms [ppms]. Most of the medications are for relapsing-remitting ms [rrms].

I asked what, if anything, can help me regain any strength or any movement in my legs. Even transferring from my chair to my bed or the tinkletorium is getting quite hard.

I had mentioned a medication last year with some serious side effects, death being one. There have been incidents of patients getting an infection called progressive mutifocal leukoencephalopathy [PML]. They have found that these people may have had PML before starting the medication so that may be the reason why.

The medication is called TYSABRI http://www.TYSABRI.com

It has not been tested on many patients with the more severe form like my ppms. My neuro has patients on it that have ppms and they have regained some to a lot of strength back. It can take 6mos to one year to see any results. It is a 3 hour infusion every four weeks 40 mins from my home.

I have a friend who uses it and he said his life has changed for the better, and he has been on it for over two years.

The referral was called in directly by my neuro so I should find out if I can try it in the next week or so.

I’m scared to death, but not trying something is even scarier. It’s only a matter of time before I lose complete mobility and am bed-ridden, so if this might help me to even be able to go back to using my walker in my home, it will be worth it.

Wish me luck my friends! heart heart

Multiple Sclerosis · PAIN

In Dreams – Falling / Doctors

January 16, 2010January 16, 2010 Tracy3 Comments

She is falling, her dress flies all around her, she sees no end, not stopping, no slowing down. Visions pass by her eyes as if she is seeing her life all around her. Pictures in her mind of days long ago. Smiles, laughter, anguish, fear, so many feelings. Faces she remembers, faces that have no meaning. Are they of people to come or of those from a past time? Falling still, has time stopped or just slowed down to let her see. She reaches out to certain pictures, places she wants time to stop and bring back to her. The dress tickles at her face as it flows around her. She cannot help but laugh.

Faster, faster she falls. It is much to dark here. Fear hits, she can feel the blood flowing through her veins. No more laughter, she wants to stop falling. She cries out, no one hears, no one is there. The faces she sees flying by her are no longer smiling. They’re distorted, angry, scared. She closes her eyes, no longer wanting to see. Two words go over and over in her mind… ‘Save me!’

© 01/16/2010

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I went to my neurologist yesterday. Every time I go, I think part of me feels that this time will be it. There will be a new medication, a cure. See, sometimes I do think positive thoughts. 🙂 But, alas, not. I am falling more on my 18.2 foot trek to the potty with my walker. I spoke to him regarding a medication I have been reading about, Low Dose Naltrexone [LDN]. It is a medication used for drug overdoses, addicts, etc. in high doses to help the addiction or jump start the heart from od’ing. In small doses [1.5mg – 5mg] it has been found to help the sxs of MS, Fibro, and other autoimmune disorders. It brings the endorphin levels back to normal which help the immune system to recover and do what it is supposed to do. It is not a cure, nor does it reverse the damage already done by these disorders. But, It has been found to slow or in some cases stop the progression of the disease.

I printed out all the info I found and gave it to my Neuro. It is not widely used in the US as of yet. He is going to do some research into this, contact a highly regarded pharmacy, and hopefully get me started on it at a low dose to see if it helps me in any way. Since our insurance has changed [shitty blue cross] and we have to pay almost 3500.00 out of pocket until full coverage, we have to be careful what I try. He offered me a clinical trial for Tysabri, but that medication still is not my drug of choice. And the side effects scare the crap out of me. So, we will see what we can do about the LDN and take it from there.

I do not expect any miracles…but it could happen!

Thanks to Kathy for the heads up on this medication [LDN].

Blessing and Hope!