New here and don't know what to do

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New here and don't know what to do

Postby lgwright » Fri Oct 05, 2007 6:14 am

Hello all. Just found this site. I have PPMS and was diagnosed 14 years ago. No real problems other than an annoying toe drag for the first 8 years then all let loose. I'm now at 8.0 on the EDSS and am full-time in a wheel chair. Can't move anything from the waist down and now it's spreading upward. My arms and trunk muscles are going quick. Things are getting critical for me as I'm sure many other people are in the same boat. I've tried many drugs but nothing works. I still work full-time from my home office and I have a wife and 3 kids to support. It's getting so tough just to make it through the day. Things are falling apart and I don't know what to do.
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Postby REDHAIRANDTEMPER » Fri Oct 05, 2007 7:56 am

first off welcome to the group..second am sorry to hear about the problems progressing with you...i have no feeling in my right side but i am still able to work outside of the house....hopefully it will slow down for ya there....cant imagine what you are going thru but wish ya luck on it and by talking on here you will feel better....or at least i feel better......keep your head up and will hope for the best for ya


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Postby AllyB » Fri Oct 05, 2007 2:30 pm

Hi there

Welcome to the site, though i am also sorry that you find yourself here. I cannot imagine what you are going through as I am only a 5 on edss...And that is bad enough! I can relate a little to that loss of independence and fear of the future, as can many others here.

There are so many new treatments being worked on right now - if you cruise this site you will find a huge amount of information - Dignan has a great list of all the drugs in the pipeline. It would be usefull to you to have a look, there may be something you are unaware of, or the people here can help if you just need to vent.

Good luck for the future, and hope to here more from you.
Al
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Postby lgwright » Fri Oct 05, 2007 8:25 pm

Thank you Ally! What is Dignan? Can you elaborate?
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Postby AllyB » Sat Oct 06, 2007 1:57 am

Hi there

Dignan is a "family elder" on this site - someone with a lot of knowledge who keeps abreast of all new treatments in the pipeline - if you know what is coming up, and something seems suitable for you, you could chat to your neuro about the possibility of participating in a trial...who knows, it may give you something to look forward to - I am not trying to give you false hope, but information is power.
I have posted the last web address I had to the drug pipeline, not sure if this link is still up to date - you could pm Dignan for his latest list, I am sure he would not mind.

http://mspipeline.wordpress.com/

Hope this helps some.

Take care and please ask questions, keep us informed on how you are doing - it must be very hard to try to work and be the bread winner when your ms is so much "in your face".
Al
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Re: New here and don't know what to do

Postby NHE » Sun Oct 07, 2007 3:04 am

AllyB wrote:I have posted the last web address I had to the drug pipeline, not sure if this link is still up to date - you could pm Dignan for his latest list, I am sure he would not mind.

As far as I know, the most up-to-date version of Dignan's pipeline list is right here. http://www.thisisms.com/ftopict-1363.html

NHE
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Postby TwistedHelix » Sun Oct 07, 2007 7:16 am

Hi there, lg,
I am so sorry to hear about the difficult time you're having: it must be awful to feel that you are getting to the point where you might no longer be able to support your family. But who supports you? Do you have access to local support services like care managers, home carers, occupational therapists and benefit advisors? If you don't, asking for help for the first time can feel like an admission of defeat but in reality it's simply a different way of providing for and protecting your family.
Having PPMS can be very isolating partly because we're a minority within a minority, (yup, me too!), and partly because most drug trials and research seem to be aimed at RRMS, but if you have a look round this site and keep checking in regularly, you'll see there's enough investigation into neuroprotection and repair strategies to keep your hopes alive,
Dom
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Postby Lyon » Sun Oct 07, 2007 11:34 am

Hi lg,
Welcome to the site. I think all of us here appreciate the situation you're in. Some here have already faced or are facing the same things you are. Others, like myself, dread the thought of it and pray it's not imminent.

My questions won't do a thing to ease your situation, but I'm interested in PPMS and your answering a few questions might help ease my curiosity a little, if you don't mind.

How old are you now?

You mentioned that you were diagnosed 14 years ago. Before that time had you gone through a long spell of "limbo" in which you were aware of problems but unable to get a diagnosis?

How far back can you trace any kind of "odd" medical problems? Migraines, unwarranted fatigue, vision problems, numbness, heart arrhythmia, panic attacks or what in hindsight might have been considered MS "hugs"?

Thanks,
Bob
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Postby lgwright » Wed Oct 10, 2007 5:24 pm

Thanks to veryone for your words. I greatly appreciate it!

Twisted, I'll answer your questions first. Nobody really supports me. It's not that I don't have access to these support services but I guess I am just hard headed. I want to do everything myself but I know it is unrealistic. My wife is my biggest support as she assists me with all the things I can't do. Other than that I have not sought out much in the way of professional help. I am considering physical therapy and have spoken to financial and benefit counselors. Luckily I can still work full-time since I am a software developer and can work from the comfort of my own home. After working 40-50 hours each week I am just too tired to do much else. I know I ultimately have to weigh the cost of maintaining my work schedule vs going on disability but with three kids and a wife to support it will not be easy to make the change. Due to the progressing MS I am going to be forced to make a change.

----------------------------------------

Bob, I'll answer your questions now.

How old are you now?

41

You mentioned that you were diagnosed 14 years ago. Before that time had you gone through a long spell of "limbo" in which you were aware of problems but unable to get a diagnosis?

Sort of. Three years prior to my diagnosis I had a weird memory loss episode that lasted about eight hours. My doctor sent me to a neurologist who could not determine the cause. Three years later, my right leg started feeling weak and my doctor sent me to another neurologist after I told him about the memory loss and they did a spinal tap and MRI's and diagnosed MS.

How far back can you trace any kind of "odd" medical problems? Migraines, unwarranted fatigue, vision problems, numbness, heart arrhythmia, panic attacks or what in hindsight might have been considered MS "hugs"?

During the three years after my memory loss episode I recall tingling in my right hand periodically. It happened a couple times a week lasting only seconds. At the time I chalked it up to my job at the time which required alot of physical exertion with my hands.

Larry
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Postby Lyon » Wed Oct 10, 2007 6:35 pm

Thanks for your openness Larry.

At the risk of being accused of owning stock in Accentia (I honestly don't have stock in ANYTHING...FAR too poor!) have you investigated high dose cyclophosphamide, which is being called "Revimmune", the rights of which have recently been purchased by Accentia?

I don't want to even hint anything one way or the other. You have to investigate and come to your own decision, but if I were in your position and something offered the slightest glimmer of hope, I'd want someone to make me aware so that I could make my own educated decision http://clinicaltrials.gov/show/NCT00296205

If interested, you would have to determine if that clinical trial information is outdated or not.
Bob
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Postby LisaBee » Thu Oct 11, 2007 7:30 am

Hi Larry,

You mentioned physical therapy, and there have been some recent articles on the benefits of PT for MS at all stages. It's no cure, but if may help you hang on to what you have or even improve in some functions. There has also been recent studies indicating exercise is at least as beneficial against depression as antidepressants.

Your neurologist can refer you to a physical therapist that works with patients with neurological conditions - I recommend you ask for that. A physical therapist can develop a program that is specific to you. You might also want to consider working with a yoga practitioner that specializes in people with physical limitations - they can do a lot of work with breathing exercises that improve respiratory muscle strength, and that in turn improves oxygen intake, blood flow, etc. There are also respiratory therapists that work in this area, you could ask your neurologist about that.

My hat is off to you for hanging in there with your work. It is TOUGH. There may be some sort of compromise between going from full time work right to disability - maybe a few hours a week for therapies might give you the break you need for your state of health, but that is a very individual decision.

Lisa
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Postby lgwright » Thu Oct 11, 2007 11:16 am

Thanks Bob and Lisa.

I have never even heard of cyclophosphamide (Revimmune) but will definitely check into it. Where can I get more info?

A few weeks ago I flew to Miami, FL to see Dr. William Sheremata at the University of Miami in an attempt to be treated with Rituxan. I have not, however, been able to obtain insurance approval and it is EXPENSIVE.

I did see a PT for a few days when I was in the hospital last month for IV steroids but never continued on an outpatient basis after I came home, mainly because I am so weak it is a huge struggle to get there and because my insurance coverage for PT is not very good. Can't afford it.
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Postby Frank » Thu Oct 11, 2007 12:25 pm

Hello Larry,

welcome to this forum :)!

Tthis might be interesting for you when considering revimmune (high dose cyclophophamide):

http://www.medscape.com/viewarticle/543719

One important thing is not to mix it up with the formerly used lower dose / long term treatment with cyclophosphamide.

Googeling for "high dose cyclophosphamide multiple sclerosis" will give you many relevant links.

Gretts
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Postby lgwright » Thu Oct 11, 2007 12:58 pm

Very interesting Frank! I am going to pursue this.
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