I Am Terribly Discouraged

[Jackie_Cochran]

I am hanging in there, I have three weeks of my old medicine left at 5 mg a day. So far I have noticed that I got a LOT more tired, and I now have constant tingling down my left arm and leg, and when I get tired I also get the tingling down my right arm and leg.

I went ahead and added three supplements, Ashwagandha, Vitamin B 12, and Evening Primrose Oil. These supplements seem to be helping me with my energy and endurance, especially the Ashwagandha. I have also noticed a general improvement of symptoms with the Evening Primrose Oil. I no longer have to use my wheeled walker in the house, but I do take it out with me to the stables to walk out to the riding ring. None of these supplements seem to be helping the tingling in my arms or legs, though, and I am not walking as well as I did when I was on the full dose of Dronabinol.

After I run out of my medicine I will have over a week without any treatment for my MS other than my supplements. If I cannot get the Dronabinol again I am seriously considering refusing any pharmaceutical treatment from the neurologist since every approved MS prescribed medicine I’ve taken has made my MS so much worse in that they all made me MORE CRIPPLED. And if I cannot get the Dronabinol because it is off label, I see no reason why I would ever want to take drugs for cancer or RA, that are also off label for MS, and which all have severe side effects.

I am still riding. My new three step mounting block is making mounting a lot easier for me. I am now getting used to my new saddle, a Pegasus Butterfly Claudia jumping saddle. Since none of the three horses I ride have a “normal” back I am learning how to use the shims in the Pegasus pad so the saddle will work properly with these horses. Once I figure the shims out I will not have to adjust to a different saddle for each horse, which will make riding properly a lot easier for me. I will start reporting on my experiences with my new saddle on my blog on Barnmice starting Saturday.

Thanks to all of you for caring about what happens to me! I appreciate your support.

[ezduzit]

I can’t tell you how much I admire your determination and strength. Sending jingles and prayers to you.

[sorrelfilly721]

I know how you feel and I don’t blame you for wanting to tell them to stick the drugs where the sun doesn’t shine. I too have to take exotic meds to stay alive and I just got told that the copay on a new one they assigned me is $899/month. Um. No. It’s very frustrating. I am praying for you.

[Jackie_Cochran]

Thank you ezduzit.

Sorrelfilly, I hope your medicine problems work out.

When I got diagnosed in 1993 the doctors only had corticosteroids to treat MS, and I decided that I would look into the older materia medica to see if I could find anything that could help my MS since the neurologists did not have anything. I am VERY glad I did all the research back then, otherwise I would be in terrible shape physically instead of just really p*ssed off about modern neurology.

The insane thing is that I have wonderful health insurance and I did not have to pay much out of pocket for the Gilenya that was starting to cripple me (which costs $6,000 a month without insurance.) I am very fortunate in that way, if I could only find a neurologist willing to prescribe me the one immune-modulating drug that did not end up crippling me further, and in fact increased my mobility rather than putting me into a wheelchair, I would be in much better shape than I am now.

[CenteredRiding]

Check with your therapeutic/handicapped riding program again. I find it hard to believe it would be only for children or limited to one ride a week. There is more than one in my area, as they are lucrative businesses. I ride with a lady (40-ish) who started out in one such, said it was $500/month.

For that money, it’s purpose is to provide therapy. The $500 one is a daily program. Probably programs and prices can be tailored per individual need.

:encouragement:

[Jackie_Cochran]

Hi CenteredRiding,

My problem is that therapeutic riding IS a lucrative business. I spend just $45.00 USD a week on my riding, I get to ride independently in the ring, and for one of my rides I get a lesson from the best riding teacher I’ve found during my riding career. Soon I will be paying $10.00 USD a week more to ride at one of the best run stables I’ve run across in the 45+ years I’ve been with horses, I do not mind since Debbie is worth every penny I pay her and I know her costs have skyrocketed since I started riding with her.

Debbie is probably 75% of the reason that I can still walk on my own two feet, through her constant correction of my position, my body relearns how to move correctly in spite of my changing neurological conditions.

Of course her horses also do their part, but by riding correctly I strengthen the muscles I need for walking better than just by riding alone. I just want to slouch into an inert puddle of protoplasm, Debbie never lets me do that, and she corrects me at the beginning of my slouch.

However if I ever end up unable to walk altogether I will definitely look into other therapeutic riding programs since they have the infrastructure to accomodate wheelchairs.

[Jackie_Cochran]

Another update, I started using my Pegasus Butterfly saddle last week. Last
Sunday I managed to ride a FULL HOUR for the first time in four years, AND I was able to run to the bathroom without any canes or my walker after my ride.

You can read my blog about my first week in my new saddle at: http://www.barnmice.com/profiles/blogs/my-pegasus-butterfly-saddle

I have great hopes for this saddle. I spent a lot less energy keeping my position in this saddle, and I was able to ride for a longer time than I have have been able to recently.

[Candle]

Have you read The Wahls Protocol? I believe she is done with clinical trials testing her protocol now, and the book is a fascinating read.

[Jackie_Cochran]

No, I have not read it yet.

I had looked at the Swank diet decades ago, but we, at that time, could not afford it and now I have serious reservations of Swank’s preferred fish because of oceanic pollution with heavy metals and artificial chemicals that concentrate in the fats and oils of ocean fish. For instance, twenty-three years ago cod liver oil helped my MS, after a few years it stopped helping me, and now when I try it my MS seems to get worse. I did consider eating organic, but it costs so much that I would have to give up riding horses to afford it, something that my body, mind and soul refuse to consider.

But when I get some extra money I will get this book. Thank you for mentioning it!

[csaper58]

Have any of the neurologists you’ve seen recently specialized in treating MS?

www.nationalmssociety.org/Treating-MS/Find-an-MS-Care-Provider

Have you researched Ocrevus/Ocrelizumab?

The Wahl’s Protocal is $7.99 at Barns and Nobel

[Rackonteur]

Have you seen the Terry Wahls website?
http://terrywahls.com/

There is some info on the diet here:
http://www.phoenixhelix.com/2013/04/08/wahls-veggie-protocol-qa/

That many vegetables a day would throw my whole digestive tract into a tailspin but everyone is different.

How near are you to Duke?

[SonnysMom]

Can you contact the manufacturer of the drug that works for you. They may be able to help you find a doctor that will prescribe it.

Good luck with your new doctor.

[Jackie_Cochran]

Well, I took my last Dronabinol pill yesterday. My appointment with my new neurologist is on October 17, so I will have over a week without any prescribed treatment for my MS.

I am increasing my Evening Primrose oil and Bilberry, taking one pill each when I wake up, in replacement for taking the Dronabinol pill. The Evening Primrose oil seems to be helping this time around, when I re-started it I no longer had to use my wheeled walker or canes to get around the house. I have been on Bilberry for 23 years now (250 mg/day), and it seems to help calm my nervous system down.

I will be letting my body tell me how much more I should take of the Evening Primrose oil and Bilberry.

The other time I was forced off the Dronabinol (that time it was the mail order pharmacy that denied me the drug,) I had an exacerbation in three days. Fortunately I know a lot more now, and I have three homeopathic remedies that have helped me when an exacerbation starts when I cannot get to a neurologist. I had to take one when I did a previous decrease of dosage of the Dronabinol, and it seemed to take care of that attack. I will select the homeopathic remedy according to the symptoms, I have one that has worked for increased hand tremors, one that has worked for when my legs didn’t know were the rest of my body was, and one that has worked for increased pain.

I will let you all know how all of this progresses.

[Magicboy]

Wishing you the very best…seems like the previous suggestion about the drug manufacturers helping to ID a doc the might prescribe for you was an interesting idea

[Jackie_Cochran]

It has been a week since my last pill. I am still walking (yeah!), and I trotted a little bit in my lesson on Wednesday, and I rode a horse this morning.

Some days have been worse than others (one morning I HAD to use a cane to walk around inside my house,) but my body then gets back to my new normal. I am getting a LOT more tired from any physical exertion, I am still somewhat shaky from exhaustion from walking around on Bingo in the riding ring for just 30 minutes this morning.

My husband may just have to wash dishes tonight. I have not been able to do any other type of housework at all.

On the positive side I felt capable enough to climb in and out of the bath tub this morning, something I was too scared to try for several days. I have more pain, thankfully coffee helps me there, but the days I ride I cannot drink coffee in the morning since it gets my hand tremors going too much for keeping good contact with the horse’s mouth.

If my new neurologist won’t help me I will look into contacting the manufacturer of the Dronabinol. I have not done this yet since my husband is self employed, and running around trying to find a new doctor would just mean that he makes less money to pay for all the new supplements I’ve had to buy to keep myself out of an exacerbation (Evening Primrose oil, double my old dosage of Bilberry, and Ashawagandha.) I am saving up to buy more Back on Track stuff since what I have does seem to help somewhat with the pain.

Otherwise I have been collapsed in bed, reading the COTH forums for hours. Thanks to all of you people for distracting me from my problems!

Next Monday I see my new neurologist.

Thank you for your support, it means a lot to me!

[Magicboy]

Hoping for the best for you with the new doc

[Jackie_Cochran]

I saw my new neurologist today.

He actually listened to me, and did not disagree with me (after hearing of my tribulations with Betasaron, Copaxone, and Gilenya) when I told him that I did NOT want another approved MS drug (the other MS drugs are either beta-interferons like Betasaron or cancer or RA drugs.)

I got a one month prescription for the Marinol and he had me drained of 6 tubes of blood for 11 blood tests, plus ordering a new MRI.

I just hope he will give me prescriptions for Marinol/Dronabinol regularly so I can continue on the one drug that mostly controls my MS without crippling me and putting me in an electric wheelchair.

He was interested in my supplement protocol when my Dronabinol ran out. He treated me with respect, listened to me, did the normal neurological exam (something my last neurologist never did), and accepted that I might actually know what I am talking about in regard to my particular case of MS.

One of the tests is going to be for Lyme disease, so that is covered, and thyroid, Vit. D., Vit. B12, copper, and various other things I can’t remember at this moment.

I nearly cried when he said he would give me a prescription for the medicine that works for me. I just hope this will go on and that I will be able to quit worrying about ending up not able to walk or ride horses.

I will probably have to wait for my medicine, most pharmacies do not carry it as a regular thing. Right now my husband is taking my prescription to try and get it filled.

Thank you all for your support during this difficult time in my life!

[cheval_convert]

What a great update. I hope that this doctor continues to listen to you and treat you with the care and respect you agree.

[sorrelfilly721]

Hallelujah! I’m so glad to hear you found a physician that will listen to you! Great news!

[Jackie_Cochran]

I am most fortunate, the pharmacy got my medicine in today, and I took my first pill. I’m going to have to get back to my old dosage slowly (my decision).

Tomorrow I ride, I don’t know if it will give me more energy yet. I’ll be taking a pill on waking, then another sometime later.

It is not so much that this is an energy pill, it increases my energy by making it easier to move so I do not burn so much energy fighting the spasms in my muscles. My movements are smoother, and my limbs are more likely to do what I want them to do. When I can do fewer properly timed aids at the correct intensity, that means that I can move my body less, thus saving me energy. I’ve already noticed that I am walking smoother, and I do not have to pay undivided attention to my walking in fear of falling down just because one leg does not appear where I want it to be.

Tomorrow it will be interesting to see if Bingo, the horse I’m riding also moves more smoothly. I’m hoping as my back muscles relax and start moving HIS back muscles will start relaxing and moving. Poor guy is very croup high with almost a goose rump and low tail carriage. I’m sure my less than steady seat has been irritating his back muscles.

It also seems to help me adapt when the outside temperature goes up, or when the my core body temperature goes up.

For the cold temperatures this medicine really helps me because my muscles tend to get quite tight, especially in the cold winds. I may no longer HAVE TO get the BOT tights if the doctor continues prescribing this medicine to me! I can buy BOT horse products to help the horses I ride in lessons or for “homework,” instead of getting BOT clothes for me because I need them for cold winds.