I stopped the Amantadine and Zanaflex

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So I stopped the Amantadine and Zanaflx in hopes of stopping the dizziness and all the other nasty symptoms. I stopped mid-day yesterday and waited all day but nothing went away. It must have still been in my system, Went to Physical therapy where they did and evaluation and it went pretty well. The therapist was nice and seemed pretty smart so I look forward to my first session. She said since I can’t heat, do to my MS, that icing for and extended period of time might help.

When I got home I had a fish dinner, it was breaded and I liked it way better than when it is not. I then wanted to take a shower/ice bath. Now I do not have an actual bath downstairs but I did not want to use one anyways as I have a new fear of slipping down and drowning,  So what I do is cover the drain in my shower and let the water raise to cover my legs before it rises over the edge. I was out of ice so I took in a bunch of ice packs from my Rebif shipments that  I have been saving. I filled it up with water as cold as it got before the shower shut off. I then put and icepacks under each leg, one in between both thighs, and one on top of each. I have reduced sensitivity in my legs so honestly I did not feel it. If I put my hands on them they started hurting after just about 5 seconds. So it was as cold as it got. Did this for about half an hour and… no luck. Legs were still stiff.

So let’s go over my options for spasticity,

Baclofen – Does nothing even at 40mg….
Zanaflex – Really did nothing but make me dizzy…
Valium – Not meant specifically for spasticity but they say it can help. Have not tried yet…
Botox Injections – October…
Clonazepam – Nope
Icing – Nope
Weed – October (Desperate)
Stem Cells – Still raising money…

I am getting way depressed because I know I can walk but my legs will not let me and so far nothing is working and I am running out of options… Getting desperate here,,, It is such a weird feeling to know that your body can do what you want it to but it just will not and you are held back by money (it seems). I mean I really do hope that the botox helps but I am tired of getting my hopes up only to be let down… It is utterly depressing… I don’t care about the pain or anything else, I just want to walk!

 Today I woke up and the dizziness was gone (though by balance is still crap) in that, when I close my eyes and tilt my head down, the word no longer spins, but my legs are still stiff. Took as much Baclofen as you can take at once, no help…

I can not write anymore, I am just too depressed…

21 Responses to I stopped the Amantadine and Zanaflex

  1. Anonyms says:

    I am glad to see "Weed" as an option you are going to explore for spasticity. What is pushing it to October? Do you have an appointment setup then?

    If you have any questions about cannabis and MS you can shoot me an email me (anonymsblog@gmail.com) and ask away. It is the only medication I currently take.

    Staff at dispensaries are generally extremely knowledgeable as they are usually patients themselves.
    If you are not a smoker or do not like to smoke there are many options for you.
    You are in good position living in a decriminalized state and have the option to seek alternative care with cannabis, meanwhile I am no better than a common criminal breaking my local (and federal) laws.

    Gotta let me know how it goes, good luck.

  2. Matt Allen G says:

    Money is pushing it. $80 appointment. And I am not a smoker but will do what ever gives me relief. I am mostly doing t for spasticity, not even sure what else it might help cuz I don't really care anymore, I just want to walk.

  3. Anonyms says:

    You have a few options. Some effective ones are edibles and tinctures.
    The edibles come in various forms, from candy to
    snacks to meals.
    Edibles can give you a full body effect that lasts for hours.
    Tinctures are another smokeless option. Mostly made with vegetable glycerin, it is in a liquid form, you simply take a couple drops under the tongue and it works similar to the edibles. Full body effect for hours.
    These options are more efficient than smoking because the effect lasts so long, but are less popular among some recreational smokers because they don't want to wait 30 mins and want an immediate high.

    Another smokeless option is using a vaporizer. The right vaporizers pass hot air through the flower and the good stuff expels in a vapor, it doesn't burn so you don't get everything that comes with inhaling smoke (although there is studies showing cannabis smoke is helping some forms of lung cancer).
    Using a vaporizer involves a hefty upfront cost for the unit itself, which range from table top units to portable e-cig type device.

    I don't know if you can pick up my excitement. I hope it works out for you. I hope it is exactly what you need and find relief in this natural earth given gift.

    If it does work, you can locate compassion groups that will provide it to you at cost (or less).
    There are people that specifically assist people with MS in this country.
    One group in CO, gives you a comfortable space for you to come garden your own plants there and assist you with growing if you want have some physical hand in it (wheelchair accessible gardens and all).

    Again, let me know if you have any questions on types or whatever. You can email me anytime, this isn't exactly blog comment stuff…
    Take care.

  4. Matt Allen G says:

    Well hmmm, you have given me some stuff to think about already, questions will come in time I am sure, just need to get in with that doc. Now that you mention it though I think I might go with the edibles, I can wait 30 minutes… I just want what ever works best.

  5. Anonymous says:

    matt you are like me .walking is getting harder but i try the right leg is stiff makes it hard .when i read what you are going through its me i dont care just want to walk .you have to stop thinking about the what ifs .focus on what you can do . and stop and thank god for it .

  6. Matt Allen G says:

    seems the more I do that the more I lose, that only goesso far. At some point you kind of HAVE to acknowledge that you are loosing something….

  7. Anonymous says:

    We are "old souls." Hope I see you in real life some day, Matt Platt. It just rhythms, nothing creepy. We will survive and prosper somehow.

  8. Matt Allen G says:

    Haha on day, wen I am rich enough to visit all my MS friends :^b

  9. Dockskip says:

    Matt,

    I could cry to find your blog right here with so much vital information! Sorry if I sound crazy. My life stopped as I knew it 6 years ago with much the same way yours did. Unfortuanatley, I did not have insurance as I had just moved to a new state to help my mom, who had MS. I never gve myself a thought in regards to that.
    Anyway, when I can afford the Doc I go. In 6 years I have had so many tests, seen so many specailists, have 2 neurologists fighting over if I have MS or not. I have the lesions on my MRI. I can't afford the LP yet… but with everything else, especaily after this long..I would think I'd have gotten further. I have however been on some of the meds you have and with horrible results.
    I can't take anything for pain (my body doesn't like that either or anything for depression) but they did give me Xanex to make it so I dont chew off and arm. I am 46. That may sound old to you..but Inside. Im 22! I was the picture of health until, "the Day". I have to walk with a cane..that was needed fairly quickly, and other days I dont walk. I have a wheel chair that was given to me graciously, but now my arms arent strong enough for me to get arround by myself with it..so don't use it much. MY mother passed away suddenly and also my dad within the same year. I am totaly alone. Dealing with this on Government $ at best..which that in itself is depressing as I used to make a much better than average salery. Now my brain is not anywhere near where it was so work is out. Govenment wont pay for LP yet, so I wait.

    Anyway I want to thank you for sharing your story, all this info..I needed it!!!

    YOu are awsome to do this, sharing all this.I so wouldn't have the strength ( which I'm sure you don't) but you do it anyway.. MAtt, YOU rock! Thank you for just being here!

  10. Anonymous says:

    It's true, I feel forever 21 as well–even though I'm exactly double Matt's age! Why can't we more easily access the spiritual world or at least have an out of-body experience since we already can barely feel our limbs? If a spiritual world exists wouldn't we be the ideal people to scientifically explore the unknown?

  11. Anonymous says:

    Dockskip

    I am glad you found Matt`s blogg! I have been reading it for a long time, not becuase I have MS, but I have a friend at your age who is. Matt writes well and has learnt and been through a lot a lot….. I want to know more, and anyway I think people should know! I have a cronical illness aswell, but one which medicine can fix -mostly. I really, really wish you and Matt all the best!! Thank you for telling your stories!

  12. Anonymous says:

    Warm thoughts to you. Subjectively, it appears that the force of our "souls" are just too awesome for our physical body. Yes, science can explain away that "mystery" too. I'm just too critical sometimes. 🙂

    Matt, do you know about the 38 parallel already?
    If not, let talk.

    Todd

  13. Matt Allen G says:

    "Subjectively, it appears that the force of our "souls" are just too awesome for our physical body" – Awesome lol. It sounds familiar but not sure that I am sure what you are referring to….

    Dockskip – I am glad you find my blog interesting, that is what keeps me going. So sorry about you parents, man… What are you dealing with? Not MS I presume? I am confused…

  14. Dockskip says:

    MAtt,

    Sorry for the confusion.. . yes,I have MS.. but because I havent had a Lumbar Puncture, the second neuroligist argues the point even after he has seen me for 5 years. IT all works a bit differently on government healthcare. So on one hand , officaly yes. ON another hand.. just an old grumpy nueurologist that has no time for anyone and prevents me from getting further help..as I need his approval for an Lp, and new MRI's. Irony is, he wont see me now as my insurane doesn't pay enough as of this year. It' all screwy and I can only deal with so much, my brain is nothing like it used to be. I am however beng graciously sent to a new Nuero tomorrow and have been given the all clear from my original guy. So.. going forward FInaly!!! Mostly up till now I have been doing many things on my own, which is why I find your site a relife of sorts. I know I'm not alone..however I am physicaly. So to see your vids, and hear what you have been trying was realy great and inspirational too. Sometimes I just want to give up.I see you are not, even when you have really bad days, you still come back with somthing your trying. Thanks for the condolances re: my folks. They weren't old,.. Mom fell into a ravine, and died of hypothermia in an ice cold stream last winter.( Part of that accident was because of her difficulty walking) Then dad just up and had a heart attack. So…it's been a bit crazy. Anyway, keep up the fight.
    Good idea to grow your own veggies to juice. Too cold in Washington for that..bummer.Glad that will be great for you!

  15. Anonymous says:

    Oh, man I hope u get the care u need soon. Your fortitude is an inspiration itself. You are not alone. Love and compassion certainly abounds in you. Matt u too. Thanks for everything.

    Matt, that numbering thing we do:
    1. I am raising the mind/body dualism question that has been debated forever and seemingly put to rest by the materialistic scientific viewpoint of many people. They could be right. Consciousness might not be the brain alone though. What do you feel or think about your own awareness?
    2. I am referring to the overactive immune system, as it's a physical part of who we are.

  16. Anonymous says:

    Oh, i remember. It was the 37 parallel line in Geography. Santa Cruz is the divide. North of there is supposedly twice as much MS as South. We both grew up so close to each other Matt, and so im wondering what effect (if any) comparing our MSes. It's just too complex anyway, kind of like the emergent properties of ecology as well as how exactly human consciousness is generated in the brain.

    Besides, shouldn't our focus be on as much practical healing as we can muster and maintaining any good relationships in our lives?

    Todd

  17. Matt Allen G says:

    dockskip – Wow, that makes me so sad… And the neuro thing makes me so MAD! Glad you see someone new though, I am trying to get in with someone new but it takes so long!

    Anonymous – I honesty do not have an opinion yet, need to do more research I think…

    Anonymous 2 – Oh yes, I know what you are talking about. Maybe I have no read about it enough but idk if I buys that yet…. But idk…..

  18. Dockskip says:

    Matt,
    Sorry didn't mean to make you sad..or mad. I know you understand the frustrations with the doc's. OK, so my new guy..right off the bat says "Cannabis"! I was a bit surprised at that.. just hadn't gone there in my head yet. HE seems like he want's to actually be of help which I greatly appreciate. He was fins in regards to current tests i want but given that he had my med history he didn't find it necessary. so off to the races to see what i get. So far..I like him and he isn't worried about what my insurance wont pay..he says he didn't become a Dr. to get rich but to help people. WOW..I think he meant it. so We'll see

    Anyway.I just say all that as to not give up no matter what. Your struggle is more profound than mine. Sorry I tend to ramble..If I go for the weed (would only consider the edibles for myself) but will let you know how that goes. Thank you again for sharing your progress as well as your struggles.

  19. Matt Allen G says:

    wow. you are so lucky, don't loose that doc cuz man, nothing but ego trips on my end. wow.

    but no, I didn't mean it like that, just sad, we all have our battles,

  20. Dockskip says:

    Yeah, the ego trips are all I have found till now. I do have an hour and a half drive to this guy ( which I get a ride) but who cares…Not like I have to go everyday.
    Sorry for the miss-spells in my posts. It takes me a while to type out anything..then correcting it takes a while too. so, sometimes I don't appear to make sense.

    a month or so ago, I was going to just give up. NO more Dr's. NO more meds… just was tired of all of it. I was pissed off that I lost a few friends along the way( no one wants to hang around the guy with an illness who isn't so happy) I was convinced that if I wallowed around in my misery I could will myself to give up the ghost. I know that's not what your doing as I get inspiration from you.I will say..I was going to cancel seeing the new guy, till I came across your site. I thought, if you could fight this and let others in on it.. then I had to have something more left in me.. Thanks Matt. For the fighting!

  21. Matt Allen G says:

    :^b we all inspire each other somehow

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