Progress Update: Fontana – Still No Hope Apparently

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So today I had my latest neurology appointment in Fontana in hopes of seeing a new Kaiser neurologist who was willing to help me. I left feeling rather disappointed despite the fact that I didn’t have my hopes up THAT high to begin with but I guess a fall is a fall. This doctor was no different than any other doctor I have seen so far… His final evaluation? My symptoms are all more then likely permanent and no treatment is going to make the symptoms subside. I basically need to come to terms with my disease and accept that this is my life and that I have to live with these symptoms.

Suck it up and deal with it. That’s all I heard. Yes I do need to accept that I have MS and that MS will always be a roadblock in my life but what I do not accept is that I will always feel the way I feel now. My first exacerbation was horrible and rendered me unable to walk or even stand. In one month I went from being stuck in a wheelchair to hiking mountains, climbing rocks, and balancing on logs above rivers. Since then I have slowly become progressively worse. I feel like I can get back to that point again but I simply am not getting any help because no one believes that I can. I got there once before I can do it again. The longer I don’t work on getting back to that point the more likely I am to develop permanent nerve damage.

Call me stubborn but I don’t want to hear that I’m never going to get better, that I need to stop focusing on what I want and deal with what I have. I don’t want to hear it, not from anyone. At this point I feel like I have a greater desire to get better to prove my doctors wrong then I do to simply enjoy being healthy. I know they are wrong, I know it, I can feel it. I know my body better then anyone else and I know that I can get back to that point somehow and I will figure it out, I guarantee it. I may not have everything figured out but I’m pretty sure that this routine maintenance work Kaiser is trying to give me to treat my MS is NOT going to cut it. What ever is going to work for me is more then likely going to be some kind of alternative medicine.
Speaking of alternative medicine, LDN. Low Dose Naltrexone… Brought this up to the neurologist today and he (just as I suspected) was against it. He felt it was too risky, he felt Gilenya (the new oral medication that was barely FDA approved less then a year ago) was the safer route. He told me LDN could cause cancer after long term use. Now I haven’t done all the research that I can on LDN yet but never did I hear about caner being an issue. So upon getting home I started looking up any information I could find on LDN and cancer. All I found was that LDN is sometime used to help TREAT certain kinds of cancer… So not really sure where this guy is getting his information from but it seems to be inaccurate or maybe he (like so many other Kaiser doctors) just thinks I’m an idiot and won’t look into the facts. Not sure.
So I can’t lie. I’m upset, I’m angry, I’m frustrated. How could I not be? Every doctor I see just looks at me and says “you look ok enough to work. Ou can touch your finger to your nose, so suck it up and get a job”. No one does any kind of extensive testing to really see that “Hey, Matt’s gate is way off”. Just because I can walk from one corner of a 5×5 room and back doesn’t mean my walking is fine. Put me on a treadmill or something I mean seriously, come on. This is the best testing you have? Or am I just not seeing that CLEARLY one’s ability to touch his nose with his finger is the best way to determine if someone is heathy or not, CLEARLY.


So what did I get out of this? Well he finally caved in to my request for a steroid treatment but plasmapheresis was “useless” and wouldn’t effect the course of my disease. I explained I am simply looking for symptom relief but he didn’t seem to understand that and just told me over and over again that steroids, plasma exchanges, alternative medication, none of them, effect the course of the disease. I understand that completely but guess what, if it makes me feel better or walk better then I honestly don’t care how many lesions are on my brain, I just care that I can have a decent quality of life. “Well,” he said, “I have just what you need for that!”.
Can you guess what it is? If you guessed PILLS you absolutely right! A $30 bottle of Gabapentin for my pain. After looking up this medication like I always do I learned that it is typically used
“to help control certain types of seizures in patients who have epilepsy. Gabapentin is also used to relieve the pain of postherpetic neuralgia (PHN; the burning, stabbing pain or aches that may last for months or years after an attack of shingles) Gabapentin is in a class of medications called anticonvulsants. Gabapentin treats seizures by decreasing abnormal excitement in the brain. Gabapentin relieves the pain of PHN by changing the way the body senses pain”
Will this help my achy joints and tender muscles? Not sure… Might help my occasional, sharp, sciatic-like, nerve pain but the bulk of my pain feels like an inflammatory issue not nerve issue… Ill give it some time but man is this bottle huge… Take 1 pill a day for 5 days then 2 a day for 5 days then 3 a day for 5 days. Man! Did I forget to mention I have memory issues?? Well, look, I didn’t expect much from this visit anyways. Got my new antidepressant and an order for monthly steroid infusions. Not exactly what I wanted but I will have to work with what I got the best I can and see how it effects me.
At this point I think the healing is up to me. Whether it’s diet, exercise, Voodoo Magic, what ever, it’s going to be up to me to fix my health. Shouldn’t be this way but this is how it is. I have some more research to do on LDN but I think I am still going to try it. It will be nice to get the input of a doctor outside of Kaiser anyways! What ever the case may be, I just want a job so I can get a little place of my own and focus of eliminating stress and living a healthy life where I can follow a strict routine and maintain my health. Too much to ask for?

PS – Almost forgot, Neuro also said that an MRI every 6 months in too soon and inappropriate and that they shouldn’t have done it… Um…. Yup.

14 Responses to Progress Update: Fontana – Still No Hope Apparently

  1. Matt Allen G says:

    PS – Almost forgot, Neuro also said that an MRI every 6 months in too soon and inappropriate and that they shouldn't have done it… Um…. Yup

  2. celtboy says:

    I've had that kind Of frustration as well. I've got tinnitus and was told "that's just the MS." I felt like screaming: " Don't you watch 'House'?"
    I was wanting some kind of test or scan to rule out any of the more serious things my hypochondriac mind was going thru. Sigh.

  3. Matt Allen G says:

    Don't you watch 'House'?"

    Lol… I was JUST thinking that very same thing….

    Ugh… So yes, I understand…

  4. JeanneK says:

    I have had an annual MRI for the last 20 yrs…..I think every 6 mo is extreme….unless you are in a flair up..ave you looked into Roy Swank's MS DIET…..

  5. JeanneK says:

    is that Gabapent. or gilenya your holding????

  6. Matt Allen G says:

    Gabapent and I would agree on the MRI if someone is stable but I have not been stable, I have been slowly getting worse so I think (in my opinion of course) that it was not a poor decision to get an MRI after about 6 months (probably more like 8 months I would have to check the dates)

  7. Jack L says:

    Matt, Every year is the common plan for an MRI. My mother has MS and hasn't had an MRI in 15 years. I have one annually.

    I was once very interested in LDN. I know a lot of people claim it works, and I don't dispute there accounts. I couldn't find any medical proof to it working.

    Have you read the book Overcoming Multiple Sclerosis by Jelinek? I would highly recommend it. It goes over many topics: medicine, diet, exercise, sun exposure, and attitude. I have read many of the books on MS that are out there, and think this one is the best one out there.


  8. Maybe you should read this book: "Healing Multiple Sclerosis" by Ann Boroch. I am an educated and realistic individual and in no way am I suggesting that you will be cured of MS, but with that being said; I strongly believe that any person living with MS should be as healthy as possible so that their body is better equipped to manage any relapse that happens to develope.

  9. Matt Allen G says:

    I think I have BOTH those books actually haha, thing is, I never read any book all the way through. I always find myself reading a little bit f one and then a bit of another then a little bit more of the first and so on. I plan on getting my "MS Data Base" much more active and expanded if that even makes sense haha….

  10. Soph says:

    My doctors say it's important for me to have an MRI every six months for a while because comparing MRIs will help us find out if the Copaxone is working.

  11. Matt Allen G says:

    That's what I have heard to, I think six months is appropriate if you are still seeing changes or disease progression on the outside and a year is good if not much has changed.

  12. Anonymous says:

    My hands/arms are getting worse recently, after 2 appointments (I was so scared I had to see my neuro 2 times this month) and guess what, he told me exactly the same "It's just MS. Your hands are as weak as the last time I saw you". Shut up doctor! How the hell you know my body better than I do. He refused to discuss treatment, and gave me Gabapentin instead of Baclofen. He probably thought that my weakness caused by Baclofen? Grrrrrrrr
    BTW, come to Vietnam, you can buy any drug without a doctor's prescription. If I want, I can buy SoluMedrol and my brother (a vet) will do the infusion for me. Hell! I just don't want to do it this way…

  13. Anonymous says:

    Oh I forgot to tell… I read somewhere that Turmeric works as effective as steroids for inflammation in disease as MS/Lupus/… It's OTC. Take sometime to check it.
    I don't have any experience with it, just an idea…

  14. Matt Allen G says:

    I know w, what's up with doctors knowing us better then we do??? When I told him that during my 1 month remission all my symptoms had subsided but one and I felt just as good as before I had MS and was hiking and climbing rocks, etc, he said "well I highly doubt that" like "OK, yup, your right doctor, I guess Im just crazy". But hmm… Never heard of that medication, OTC you say? Ill have to look and lol wow, I wish I could just buy everything I needed to do my own infusions lol!

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