This Is MS Multiple Sclerosis Community: Knowledge & Support

You have also just described me, although I am a little younger than your aunt. I totally agree with her advice.

gwa

Bob,

There is nothing out there RIGHT NOW to treat SPMS and if there was, I would have gone for it ASAP.

Even JH has admitted that RI did little to nothing for SPMS and some of us here with the progressive forms of MS actually contacted JH and were told this.

It is going to take a lot of nerve repair to help those of us with the progressive forms of MS and I don't see that happening any time soon.

Your theories are unproven and I don't buy them. Until someone figures out how to stop gray matter atrophy, progression will continue because atrophy is the main problem with SPMS, not inflammation.

gwa

..

it will be 10 years before anyone knows about this drug, some dont have the time or maybe you do is it the drug or is it the ms (the monster full of delusion) . it's a crap shoot go for it , everyone that can try it should or maybe take some vitamins or antibiotics instead

_________________
Had ms for over 19 years now.

[QUOTE=marcstck;234139]

I was told by the administrators of the program in revenue works best on early to mid-stage RRMS, and that they are finding that patients with more advanced SPMS, or PPMS do not respond as well, if at all.
[/QUOTE]

This is a quote from marcstck posted on April 4, 2008 which is virtually the same thing I was told after emailing JH.

Bob, you do not have this disease and I appreciate all of your posts and reading ability, but having to live with this disease for years and knowing that there is still nothing out there to help many of us is different than not having the disease or having a wife who is only mildly impacted with few symptoms.

I no longer believe in the saying,"A cure is just around the corner", or a treatment for that matter, which is what I first heard it almost 37 years ago. Today there is still nothing that will stop progression in SPMS and I believe it will be difficult to prove that a new med is halting the progression because the disability becomes slow, although steady, and years can go by with little to no progression without meds.

There is a lot of research which is now showing that the primary problem in SPMS is gray matter atrophy and that such atrophy has been going on from the beginning of the disease. Much of this literature has been posted on this forum in the past few months.

I will be one of the first in line when a med stops the progression, but right now no such animal exist of which my neurologist or I am aware.

MBP8298 is such a drug that the makers believe may possible stop the progression of SPMS. The last stage trails are starting soon and it may be in a few years the drug will be available. This one does sound more hopeful to me than most others being trialled now.

The people on this forum are remarkable and each is trying to become as informed as current publications and research allow. They are also hunting for better treatments for themselves and better lives for their families.

gwa

Kyle,

You need to be aware that the quotation in question was within the context of treating a patient with aplastic anemia---not MS. In aplastic anemia, the patient's immune system is attacking its own bone marrow---in other words, the place where the blood products that comprise the "immune system" are made.

As a result, the use of HiCy in treating aplastic anemia is riskier than in treating MS, since in aa patients you are destroying an immune system that has already been substantially destroyed by the disease itself.

On average, aa patients must spend 2-3 times longer without any functioning immune system after receiving HiCy than MS patients. This places aa patients at greater risk.

It is also important to remember that Lovelace was receiving this treatment in the 1970s---when it was still poorly understood and regarded as highly experimental.

30 years have passed.

A lot has changed.

..

Bob,

One needs to know what to stop before trying to stop "it".

gwa

..

Hi, I'm new here and am trying to get into the HyC program. They have told me I am a good candidate for the program. I have atypical trigeminal neuralgia from a lesion on the trigeminal nerve in my brain stem. The constant facial pain is life threatening! I have had 1 balloon ryzotomy and 2 laser surgeries trying to make the pain stop. While I received some relief, it has been minimal. I am finally working with a pain specialist who has me on Azira - a 24 hour morphine with immediate release morphine for pain breakthroughs - it is enough that I can now at least breathe, but still have to keep talking, smiling, and chewing to a minimum. This started a year ago. I made it clear to all of my medical team that if we couldn't get the pain to stop, I would kill myself. Don't worry, this isn't a 911 situation. I have a great therapist, psychiatrist, neurologist, (the list goes on) team that is helping uncover all the possible options. While this treatment isn't a guaranteed solution, it provides me with hope. I think any life situation lacking hope is life threatening. I was dx 9 years ago, using Copaxone and worked my way out of needing a wheelchair for outings 4 years ago. I'm physically strong and my overall health is excellent. This lesion hit me a year ago. My attitude is that any risks are worth it. Then again, I'm not one who thinks death is a bad thing - since it happens to all of us. I've never wanted to be a miserable old lady and I'm only 47 now. I would love to be part of a research program that has the potential to help others with this disease. I could get hit by a bus tomorrow. Have I contributed all I can to society? Have I lived the life I hoped I would live? Yes. So, I feel like it is a gift to participate in a program that could 'cure' me AND help others. I would love to be able to chew again, sing again, shoot - even hum again.

We can choose to focus on the negatives in life or the positives. What a gift that this research is even being done. It is certainly a personal choice for all of us and isn't great we are in a society where we can CHOOSE what treatments we are willing to try. I'm excited about the opportunity to work with JH. I would love to hear about other experiences with the treatment.

I am a willing and grateful guinea pig!

Dear Seriphina,

I can totally understand why you are at withs end with TN, the main reason I "lurk" around thisisms is a very close friend of mine just 33 suffers from TN ( as a result of a lesion in the brainstem ) from MS

I can only begin to imagine the pain you are going through, she says that the pain from TN is 1,000,000,000,000+ times worse than childbirth.

She does get some respite from tegretol, but she will not have surgery, as the TN appeared after she had a minor operation.

Anyway, I have suggested that she contact JH as she is in that much pain with TN, what is the worse thing that can happen . Death ?


She often thinks about suicide from the pain but I am strongly thinking this may be a potential therapy for her

If you do decide to have the treatment, I would love to see it help you because if it does, you may indirectly save another life.

Peace Out

Sandon

Thank you so much for your response. Is there any way she and I can be in contact with each other??? My TN was an initial symptom 9 years ago and then went away. I believe dental work last year triggered my current onslaught. The laser surgery worked great the first time - the worst part was the screws in my skull to hold the halo on for 6 hours. The laser surgery showed relief in 2 wks. I'm glad the tegretol worked for her. I was taking tegretol when TN started 9 years ago. I am on so many drugs I think I'll explode! Since I've tried everything, the pain Dr. has been awesome about helping me. Cymbalta also really helped.

There are so few of us who suffer from the atypical TN, it would be nice to have an email pal to share complaints with. YOU are an amazing friend to understand what your friend is going through. I am surrounded by people who get it. I had a bunch of friends helping me fix up my house and when I was trying to finish a sentence and the pain put me on the ground. So, that made it easy to understand.

Anyway, this isn't a TN forum, so enough about that. I will keep folks posted. This treatment may not help the TN, but I'm willing to try HiCy before having the nerve completely severed leaving the right side of my face/eye without function. Plus, I don't want the rest of my symptoms to get worse.

Thank you for logging in.