To Jellybelly (and Others) re MS

Discussion in 'Fibromyalgia Main Forum' started by dhcpolwnk, Oct 16, 2002.

  1. dhcpolwnk

    dhcpolwnk New Member

    Hi Jellybelly. On another thread, you asked about the timing of my mycoplasma pneumonia relative to my MS diagnosis. Our whole family came down with the pneumonia (starting with our son) in, I think, 1986 or 1987. My MS was diagnosed in 1978, and I had symptoms I can definitely connect to MS going back to 1967. So my MS definitely predates my bout with mycoplasma pneumonia. And yes, I have seen your messages about mycoplasma and fibromyalgia. That's what got me to ask my doctor about it. Thank you!

    MS is a very strange and variable disease. It used to be that once you were diagnosed, a lot of doctors just sent you on your way ("Diagnose and Adios" was the old adage), though some docs (and I was lucky enough to have one of the best) really did try to treat at least the symptoms and to offer supportive suggestions for how to get the most out of your life and use what was available--including various kinds of equipment--to get around any physical limitations imposed by the MS itself.

    About 10 years ago, new drugs--primarily bio-engineered self-injectable beta-interferons--started coming on the market. There are now four that are considered standard in MS treatment: Avonex (which I soon will be starting to take), Betaseron (which was the first), Copaxone (not an interferon, but still an injectable) and most recently, Rebif. These used to be known as the ABC drugs, but with the addition of Rebif to the group, the alphabet soup has changed a little. (Some now refer to these as the CRAB drugs. <grin>) Anyway, these drugs actually affect the MS disease process, reducing the number of attacks and over the long haul, reducing accumulation of disability. It's recommended that people get started on one of them as soon as they get a confirmed diagnosis of relapsing-remitting MS, because recent research has found that untreated MS can have subclinical but significant effects on the brain.

    I was diagnosed before the first of these drugs was developed, and my MS was stable for many years; so I saw no reason to start on the drugs, especially since interferons have been associated with depression, and I had a bad depression/suicidal thoughts reaction to another drug I'd taken for my MS myoclonus symptoms. Besides, for much of this time, I have had no insurance coverage for drugs, that all of the CRAB drugs are expensive ($10,000 or more a year). I think all of the companies have patient assistance programs for those who can't afford to pay. I know the Avonex program is helping me.

    My point is that if you suspect that you, your Mom or others in your family have MS, it's now both worthwhile and important to see a neurologist and get diagnosed. (An MRI is the gold standard but not the only factor in diagnosis.)

    Just remember that many MS symptoms look like symptoms that also can be caused by other things. So don't *assume* it's MS or let doctors who really don't have expertise on MS throw the diagnosis at you because they can't think of anything else--unless they are also willing and able to refer you to an appropriate specialist.

    Also remember that an MS diagnosis is absolutely *not* the end of the world! To get an idea of what I've been doing since my MS diagnosis, I invite you and everyone else to visit my personal web site, LRM's Place. If you do a Google search on my full name, Laura Remson Mitchell, I think my web site is the first one that shows up in the search results. Using my name also brings up my web site on most other search engines, though not all of them uses my site's title. Some, like Yahoo, just use my name.

    By the way, when I was diagnosed with MS back in 1978, I also was tested for lupus. My husband's mother had lupus and died of kidney failure years before Neil and I met. So my being tested for lupus probably pushed some emotional buttons for him. As I think I've said before on this board, I'm very lucky, because Neil has been extremely supportive. I don't think I could have done half of what I have without his help.

    I hope this information about MS is useful.

    --Laura R.M.
  2. dhcpolwnk

    dhcpolwnk New Member

    Hi Jellybelly. On another thread, you asked about the timing of my mycoplasma pneumonia relative to my MS diagnosis. Our whole family came down with the pneumonia (starting with our son) in, I think, 1986 or 1987. My MS was diagnosed in 1978, and I had symptoms I can definitely connect to MS going back to 1967. So my MS definitely predates my bout with mycoplasma pneumonia. And yes, I have seen your messages about mycoplasma and fibromyalgia. That's what got me to ask my doctor about it. Thank you!

    MS is a very strange and variable disease. It used to be that once you were diagnosed, a lot of doctors just sent you on your way ("Diagnose and Adios" was the old adage), though some docs (and I was lucky enough to have one of the best) really did try to treat at least the symptoms and to offer supportive suggestions for how to get the most out of your life and use what was available--including various kinds of equipment--to get around any physical limitations imposed by the MS itself.

    About 10 years ago, new drugs--primarily bio-engineered self-injectable beta-interferons--started coming on the market. There are now four that are considered standard in MS treatment: Avonex (which I soon will be starting to take), Betaseron (which was the first), Copaxone (not an interferon, but still an injectable) and most recently, Rebif. These used to be known as the ABC drugs, but with the addition of Rebif to the group, the alphabet soup has changed a little. (Some now refer to these as the CRAB drugs. <grin>) Anyway, these drugs actually affect the MS disease process, reducing the number of attacks and over the long haul, reducing accumulation of disability. It's recommended that people get started on one of them as soon as they get a confirmed diagnosis of relapsing-remitting MS, because recent research has found that untreated MS can have subclinical but significant effects on the brain.

    I was diagnosed before the first of these drugs was developed, and my MS was stable for many years; so I saw no reason to start on the drugs, especially since interferons have been associated with depression, and I had a bad depression/suicidal thoughts reaction to another drug I'd taken for my MS myoclonus symptoms. Besides, for much of this time, I have had no insurance coverage for drugs, that all of the CRAB drugs are expensive ($10,000 or more a year). I think all of the companies have patient assistance programs for those who can't afford to pay. I know the Avonex program is helping me.

    My point is that if you suspect that you, your Mom or others in your family have MS, it's now both worthwhile and important to see a neurologist and get diagnosed. (An MRI is the gold standard but not the only factor in diagnosis.)

    Just remember that many MS symptoms look like symptoms that also can be caused by other things. So don't *assume* it's MS or let doctors who really don't have expertise on MS throw the diagnosis at you because they can't think of anything else--unless they are also willing and able to refer you to an appropriate specialist.

    Also remember that an MS diagnosis is absolutely *not* the end of the world! To get an idea of what I've been doing since my MS diagnosis, I invite you and everyone else to visit my personal web site, LRM's Place. If you do a Google search on my full name, Laura Remson Mitchell, I think my web site is the first one that shows up in the search results. Using my name also brings up my web site on most other search engines, though not all of them uses my site's title. Some, like Yahoo, just use my name.

    By the way, when I was diagnosed with MS back in 1978, I also was tested for lupus. My husband's mother had lupus and died of kidney failure years before Neil and I met. So my being tested for lupus probably pushed some emotional buttons for him. As I think I've said before on this board, I'm very lucky, because Neil has been extremely supportive. I don't think I could have done half of what I have without his help.

    I hope this information about MS is useful.

    --Laura R.M.
  3. dhcpolwnk

    dhcpolwnk New Member

    You wrote: <I have seen a nuerologist and have had an MRI, all NORMAL. My mom has had both and again all NORMAL. In my reading it seems that scarring on the brain does not always show up.>

    That's right, especially if the person who read the MRI looked only at T2 lesions and didn't check for T1 lesions. Also, if you and your Mom had MRIs on the brain only, the results obviously wouldn't show lesions in the spine. Spinal MRIs are more difficult and expensive to do, I understand--and harder to interpret. But some people have MS symptoms primarily related to problems in the spinal cord, not the brain.

    You wrote: <My mom is on the Avonex, and she is totally thrilled about it. It's not cheap though at this point, $200.00 per shot, and she gets one a week. May of her symptoms have reversed. Some things you wouldn't even think of like she is sleeping through the night. She used to not pee all day long and now she is. Numbness is backing off and she has a ton of enery. She was getting pretty bad and I was afraid I was going to loose her. I'm very exceited for her find.>

    Yeah, I know Avonex is expensive. One batch (a four-week supply) costs $985--more than $12,000 a year. With the Avonex Access program, we will have to pay for the first batch, then Avonex will supply the other 12 for the year. Next year, I'll be eligible for Medicare (after 24 months on SSDI). I think the amount of help varies depending on your level of financial need. Medicare recently said it would pay for Avonex if people need to get the shots in the doc's office. I'm not sure how that's going to work out--or whether we will need to get the doc's help with the shots even before that. In any case, the Avonex people told me they have someone who will work with me to help get the Medicare coverage and/or otherwise help us pay for the drug.

    I'm delighted to hear that your Mom is doing so well on Avonex. I hope I'll have that kind of positive response, too!

    You wrote: <One thing the nuerologist told me is that MS doesn't particularly run in families. Well between me, my mom and my daughter we all have the same symptoms at varying stages. Finding clusters seems to be kind of new thing. Have you read or heard anything about this?:}>

    Yes, family and even geographical MS clusters *have* been identified. I don't think they have an explanation yet. Maybe your neuro was just trying to emphasize that MS isn't really an genetically transmitted disease. I think that's true. For many years, however, it's been said that people can inherit a *susceptibility* to MS, just as people can inherit a susceptibility to diabetes. They're still trying to figure out just what the triggering infectious agent in MS might be, and if the researchers you mentioned in another post are right, maybe mycoplasma plays a role in that end of it. If so, maybe I had some other mycoplasma infection before the micoplasma pneumonia, but nobody knew micoplasma was involved.

    --Laura R.M.

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