HELP! Need Doc who can Diagnose with Negative MRI!!!

[jazzgirl]

I was diagnosed when MRI was not even in existence..1979. I had optic neuritis and some bladder spasticity, both which had been found on examination.

I'm sorry that you're feeling so poorly. It is frustrating to know that something is just not right, and no one is paying attention to what you're saying. . Your symptoms do sound similar to someone who has the disease, but they're also pretty non-specific and could be due to many other problems and not just multiple sclerosis. I do know lots of doctors who specialize in treating multiple sclerosis. Where do you live?

[Shashi]

I've become of the mind that as long as I'm not in that boat, I don't really need to be injecting myself everyday with an overpriced drug that could be available for someone much worse off than myself. After all, the more people who use it, the higher the price goes, right?

My new neurologist (MS specialist) told me that he could start me on DMDs, but he doesn't want me having to inject myself unnecessarily if it's not MS. He also said they don't work all that great anyway and they're expensive. He said as long as I'm doing okay and not progressing into worsening disability, which I don't seem to be, we'll just manage my symptoms for now. He also told me he could give me steroids if I needed them, but I hate steroids! The side effects are awful, plus the one dose that I've taken caused me to end up with cataracts. I think I'd rather just grin and bear it!

[chloi]

THANK YOU ALL!!!

I want to start by saying "Thank you" to all of you for your help. I can't even tell you how much I appreciate it. It sounds like you all have been through so much, as well. I'm so glad that I found this forum to connect with others such as yourselves. I saw a variety of questions in your responses so here are the answers:

• Also diagnosed with Intention Tremor
• Also diagnosed with cataracts at the age of 36
• Extreme bladder spasticity and incontinence
• Have been ruled out for Lupus, Lyme, other possible conditions, etc.
• Have one lesion in Pituitary area, which Neuros say is an Endo issue. Endo says it is not. However, have seen literature stating that lesions can be anywhere in brain, including Pituitary
• Have had three major "attacks" since February of 2011
• I can and will travel anywhere if there is a physician who can diagnose me without lesions
• Still trying to get an LP
• Have researched and discovered that the Tesla 3 (3T) MRI is much better than a 1.5T as the strength is twice as strong. However, only certain facilities have a 3T and, it is my understanding, are slightly different to read so you need great physicians and radiologists to help

I do see how being a woman can affect one's diagnosis. I can already see that the physicians are heading down that path, completely disregarding the concrete evidence that we do have (i.e. Cataracts, Lesion in Pituitary area, etc.)

Jazzygirl, you said that you know many MS physicians. Any who you know are capable of "seeing out side the box" and diagnosing that 5% without lesions? Thanks, ALL!! Talk soon...

[jazzgirl]

Unfortunately, no Chloi, I do not know any neurologist who will diagnose you without the corresponding lesions. Well, I should say none of the specialists that I've seen would give someone the diagnosis without corresponding lesions. I'm sorry, I know that's not very helpful.

I was diagnosed clinically in 1979, but I recovered and did not have any obvious symptoms (except to me; I was a dancer and always knew something wasn't right) until 1993. I got very sick then and wound up spending 8 days in the hospital. I got my definite diagnosis that year. I would hope that no one in this day and age would have to wait that long since there are treatments now that may slow the disease's progression.

How long have you suspected MS? Have you had any neurological testing done?

(P.S. Cataracts are not a symptom of MS. They're fairly common in the general population).

[kingrex]

I have one lesion in the pituitary area, but I am being told by Neurology that, since it is in the pituitary area, it is an Endocrinology issue. Then, when I go to Endocrinology, they say it is not an Endo issue.

Actually, the pituitary is a gland which isn't part of the brain, i.e., it lies outside the central nervous system, so I doubt you have an MS plaque on your pituitary gland. Do you have the radiology report?


rex

[hope32]

I've become of the mind that as long as I'm not in that boat, I don't really need to be injecting myself everyday with an overpriced drug that could be available for someone much worse off than myself. After all, the more people who use it, the higher the price goes, right?

Isn't it the opposite? My husband was in the pharmaceutical industry for 12 years, and his best friend and brother still are so I've learned a bit. Drugs are incredibly expensive to develop and when you have a specialty drug that's used by a relatively small number of patients, the drug has to be expensive in part to recoup the millions of dollars that were spent to develop the drug, get it through clinical trials, etc.

[Thinkimjob]

Copaxone is still $12,000 a year, and it's the most 'popular', so I don't know.

[Shashi]

Copaxone is still $12,000 a year, and it's the most 'popular', so I don't know.

Does insurance pay for any part of that price? If not, then I am glad I haven't been diagnosed, because I wouldn't be able to pay for the treatment! So, technically I'd be in the same boat I'm in anyway. (Though it would be nice to know that I'm not just nuts.)

[pumpkin32]

neg mri

my neuro gave me the diagnosis before the mri. i have been at my appointment after my mri to get the results and my neuro always reads his own, not relying on what someone else said on a report. he goes over in detail showing me everything good and bad. he pulled all my mri reports going back to when i was 19 (I'm 36 now) showing me all the scarring. i went for years seeing a neuro who blamed all my problems on hormones and stress telling me i had "clear" mri's which was not true.

some feel it is better to not have the dx on their medical records if their neuro is willing to treat them with the proper meds due to insurance nowadays. really having the dx is not as important as treating the symptoms. if ur doc is willing to treat u let him, there are lots of people who are just thrown aside and told they are crazy or having hormone issues and never get offered anything even near proper treatment. getting the dx seems so important now but its not all its cracked up to be! sometimes i think its better mentally not to know because it is a heavy burden to carry at times. i can't remember what it was like to not have ms and sometimes it saddens me.the two little words ms can change you greatly no matter how prepared you think you are. i wish you good luck, and if you are in cincinnati, ohio try river hills neurology, dr.james anthony i love him.

[Johooper]

Does insurance pay for any part of that price? If not, then I am glad I haven't been diagnosed, because I wouldn't be able to pay for the treatment! So, technically I'd be in the same boat I'm in anyway. (Though it would be nice to know that I'm not just nuts.)

Thinkimjob is from Australia like me and he is quoting the price our medicare system pays for the drug itself, we actually only pay $34 a month max if you have a concession card I believe its cheaper. We dont have the insurances like the USA we just have a max script fee.

Jo

[jumpinjiminy]

Isn't it the opposite? My husband was in the pharmaceutical industry for 12 years, and his best friend and brother still are so I've learned a bit. Drugs are incredibly expensive to develop and when you have a specialty drug that's used by a relatively small number of patients, the drug has to be expensive in part to recoup the millions of dollars that were spent to develop the drug, get it through clinical trials, etc.

Sure, that's a factor as well. But there is a lot of research money for MS from the government and non-profit orgs like NMSS. MS isn't that rare of a condition. If the odds are roughly 1/1000, and we have 300 million people in the US, that means about 300,000 in this country alone have MS.

I'm not sure what the profit margin is on a med like this, but it's been around for 20 years or better. These numbers work out to be $3.6 billion annually for copaxone treatment if all the people with MS in the US were taking it. If the average a person stays on C is 10 years, that would look more like $36 billion.

Of course, these guesstimates are probably not quite on the mark, because the prices have gone up over the years rather than decline. One would hope that after 20 years on the market, along with public and non-profit funding for R&D, a company would have realized their gains many years ago.

I'm not sure how high the others run, but MS drugs seem to be pretty profitable due to the number of people with the condition looking for treatment. Any new discovery or promising treatment coming down the pike drives pharma company stock prices up. There have to be some gains in there somewhere or they wouldn't pursue treatments for the condition.

After the costs of R&D are recouped, what drives the cost other than demand and manufacturing expenses?

Shashi, if you have prescription drug coverage, you would pay what your plan outlines. Some have a copay, some have a percentage. I've been seeing more and more insurance plans offering 50% cost share on medications. There are some lucky folks out there still with simple copays on everything. But it seems like the trend is moving toward a percentage cost-sharing structure, which is going to mean a lot of people won't receive treatment for their health conditions unless the prices of pharmaceuticals come down to match real income levels.

[ktpoll]

What is Dr. Samanta's opinion when it comes to negative MRI's and a ms diagnosis? I am in the same boat and really dread going to a neuro that basis everything on the MRI.

[boxer601]

Also in limbo

I have 3 lesions on my brain they say they are not typical of MS. If not then what are they? I have had 6 MRI's and 7 catscans the whole battery of tests for anything else. The lumbar spinal all negative or close to normal. I have had 3 bouts of ON hospitalised on IVS for 4 days, numbness tingling , burning , vibrating feelings all over. Have had my right side go numb . face numb, and got 2 positive dx of MS final specialist i seen said he isnt sure cant say it is MS but cant say it is not. One doctor had started copaxone but stopped me after 2 months to see what would happen.
Had headaches , footdrop forgetting things, speech issues and more. Now they only have me on Lyrica and it is doing nothing. Hate Limbo land. Goingto Mayo clinic in February who after getting my records got me set up with the MS clinic. Wishing you all good luck as well

[onlyairfare]

I was clinically diagnosed with MS long before the invention of MRI. The definition was "lesions separated in time and space, with no other explanation after thorough work-up." I had ON and an abnormal VEP, followed by a transient weakness in one leg a few months later. I didn't care for the "bad" diagnosis as there was no treatment back then either, so I ignored it for years. I paid the doctor visit fee in cash so there was no insurance claim filed, then never went back. Otherwise, as a then-self-employed individual, I'd never have gotten health insurance again.

So perhaps the only way to be diagnosed without MRI now is via time machine - go back 30 years. MRIs cannot be done on people with metal in their bodies, and some patients "can't" have them because of claustrophobia. Maybe if one has a negative MRI, one could go see a new neurologist and state an inability to undergo MRI because of metal or claustrophobia.

As far as the cost of MS meds in the US, I do not understand why it is not price fixing. All the CRABs are around $3,000 - $3,500+ per month "list price." I started Copaxone in 2002 and the list price was $985 per month. I quit in 2008 when my employer changed insurers and my co-pay went from a flat fee of $50 or so per month, to 25% of the list price, which had increased to $3,200. That would have cost me $800 per month out of pocket (almost $10,000 per year, on top of premiums of $1,600 per month, as well as other co-pays and deductibles) so I quit.

The cost of drug development runs hundreds of millions of dollars - $800 million the last time I read a statistic. But if Copaxone was profitable at $985 per month, I am sure the R&D was recouped long ago, so the remainder is "greed." Of course "we the people" have chosen to have a for-profit health care system, including pharmaceuticals.

jumpinjiminy, only one-third of all US patients with MS are on any DMD at all. So the cost/profit of all drugs is spread among "only" 100,000 patients. I read in the Wall Street Journal a fwe months ago that the number of employers shifting to a percentage co-pay rather than a flat fee is just under 20% now but rapidly rising. Since so few people can afford $800 or more poor month, I suspect the number of MS patients not on medication will rise.

[jumpinjiminy]

As far as the cost of MS meds in the US, I do not understand why it is not price fixing. All the CRABs are around $3,000 - $3,500+ per month "list price." I started Copaxone in 2002 and the list price was $985 per month. I quit in 2008 when my employer changed insurers and my co-pay went from a flat fee of $50 or so per month, to 25% of the list price, which had increased to $3,200. That would have cost me $800 per month out of pocket (almost $10,000 per year, on top of premiums of $1,600 per month, as well as other co-pays and deductibles) so I quit.

I would agree with you on this one. I saw a figure last night that said the cost of the CRABS in Europe are $800/month but 3x that here in the US. My suspicion is it has something to do with the Medicare Part D plan that the government decided to pass without bargaining for lower costs. It was a golden, gift-wrapped package to the pharma companies. The message sent was loud and clear. They wasted no time in taking advantage of it either. It won't stop until they bankrupt the US taxpayers. Oh wait . . . they already did.

And then there is also the monopolistic maneuvering they do to prevent the sale of equivalent generics like Cephalon was caught in this last year or so. I'd imagine this sort of industry play is just the tip of the iceberg.

The cost of drug development runs hundreds of millions of dollars - $800 million the last time I read a statistic. But if Copaxone was profitable at $985 per month, I am sure the R&D was recouped long ago, so the remainder is "greed." Of course "we the people" have chosen to have a for-profit health care system, including pharmaceuticals.

I can agree with this except the part about "we the people." It seems more to me the big money industries have chosen this for us, and we've had little choice but to go along with it. I would imagine the cost of manufacturing Copaxone is incredibly high because of how it's done. An $800 million price tag for drug development is high, but just like the oil industry always citing supply and demand for their prices, it seems over-used and over-estimated. Just my humble opinion. They all seem to be doing better than the rest, so there is some major cream rising to the top across the board.

jumpinjiminy, only one-third of all US patients with MS are on any DMD at all. So the cost/profit of all drugs is spread among "only" 100,000 patients. I read in the Wall Street Journal a fwe months ago that the number of employers shifting to a percentage co-pay rather than a flat fee is just under 20% now but rapidly rising. Since so few people can afford $800 or more poor month, I suspect the number of MS patients not on medication will rise.

I fear the WSJ is warning us of what to expect with our insurance plans, whether government subsidized or private (aren't they all turning out to be the same darned thing anyway?). But what happens when we can't afford meds made in the US anymore? More people lose their high-tech jobs to those across the big pond that can do it cheaper. It's the rallying cry for outsourcing and offshoring. And so it continues . . .

Greed. Pure and simple. I'm a big fan of single-payer, with price controls. But we can't have big government telling the industries how to go about their business. It's just unAmerican! It's an American tradition to allow corporations to rob the public coffers faster than the IRS collects tax monies!

It's obviously a more free country for some than others. And by free, I mean financially free.

Good golly, you got me started. I must put down the keyboard and walk away now before my head explodes.

Sorry for the thread drift . . .