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Old 05-10-2010, 12:36 PM   #1
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Is MS diagnosis confused with Parkinsons?

Both my parents had Parkinson's Disease, had tremors, visual issues, some balance issues, and eventual senility. The tremors were evident in their fifties and sixties, the diagnosis not until their seventies and eighties.
I am 60, and have recognizable symptoms similar to theirs. They never had MRIs, just a family history of Parkinson's (grandparents, brothers)

I took care of them and know the disease well. After they passed, when I was in my fifties, I began to have tremors. I had had numbness in my forties, and visual problems in my thirties.

I was diagnosed in my late fifties with not Parkinson's but Multiple Sclerosis ... no one in my extended family ever had this diagnosis. I was prepared to deal with Parkinson's after retirement, but now I'm dealing with MS while trying to reach retirement.

I think I have what my parents had ... maybe wishful thinking, maybe I'm right... I take nightly injections that burn for MS ... they had nothing like that while they were working and living independently with tremors etc. I wish I had never gone to find out what I have ... and I doubt the diagnosis, and unfortunately resent the treatment and feel guilty that others who seek it cannot get diagnosed as rapidly as I was.

Has anyone else ever found out later that what doctors called and treated as MS was actually Parkinson's To Be? Or am I grasping at straws because of this painful, awkward, unattended treatment? I now also take anti-depressant and anti-anxiety meds, because of the diagnosis...
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Old 05-12-2010, 06:58 AM   #2
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Re: Is MS diagnosis confused with Parkinsons?

Pens--

You said you're doubting your diagnosis. I don't know anything about MS. Can it be definitively diagnosed by tests? If not, I'd get a second opinion from a movement disorders specialist (a neurologist with advanced training in movement disorders like PD). PD can't yet be pinpointed by existing tests (although a flourpdopa PET scan of the brain can help, I've heard). Diagnosis depends on clinical symptoms and the skill of the doctor. So it can easily be misdiagnosed. According to my husband's specialist, there are many other neurodegenerative disorders which could cause similar symptoms.

Anyway, we are just getting started with all this ourselves. My husband had a general neurologist tell him he definitely has PD, while the specialist (trained at Beth Israel in NYC, which has a big movement disorders center) is sending him for further testing, and suspects it's not PD. We are going to Columbia and NYU, also.

It's important to try to get the diagnosis right--especially if your treatment (the injections) is hard on you.

wcl

Last edited by wcl; 05-12-2010 at 07:06 AM.

 
Old 05-12-2010, 10:50 AM   #3
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Re: Is MS diagnosis confused with Parkinsons?

Quote:
Originally Posted by wcl View Post
Pens--

You said you're doubting your diagnosis. I don't know anything about MS. Can it be definitively diagnosed by tests?

It's important to try to get the diagnosis right--especially if your treatment (the injections) is hard on you.

wcl
My formal diagnosis is probable relapsing remitting ms ... it was diagnosed with a series of mri's, lumbar puncture and blood tests ruling out the many others, after many years of odd symptoms (numbness, imbalance, double vision, head and hand tremors, and daily headaches which I resolved with a change in menu - no more meat and dairy) ... all indicated ms. Maybe it is ... but ms has such an iffy prognosis and threatens impairment at a younger age than my parents eventually had with Parkinson's ... I also had a second opinion who concurred with the first. Still, I wishfully doubt.

I will continue with the ms treatment until I retire, and then I'll wait to see what happens without it, once my pension is secure and my health insurance can continue in retirement. Three more years; I love my job and want to continue to do it well, without the threats of what ms offers (specifically, I am afraid of blindness taking me out of the classroom.)

Thank you for responding ... I'll keep wondering...
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Old 05-12-2010, 12:14 PM   #4
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Re: Is MS diagnosis confused with Parkinsons?

Pens--

I have a dear friend who was diagnosed with MS in 1977. She is 66 now--and it's about thirty years since her diagnosis. She has been in remission all that time, and seems to manage just fine. She lives by herself in a third floor walkup in the city--not an easy living situation even for someone without MS. But she says it's not a problem.

Just want you to know that sometimes we read things about outcomes and assume that will be us. But it often isn't. Some people might be affected badly and others hardly at all. Michael J. Fox (who has had PD since age 28)said something about all this that I find very memorable, and I'd like to share it with you, as best I can remember it: Why worry about a bad future, when it's out of your control, and might not happen anyway? If it does happen, that means you'll be worrying about it twice! If it doesn't happen, then you'll have worried (and made yourself miserable) for no reason.

Anyway, just thought I'd pass that along. Please keep me posted on how you're doing, okay?
wcl

 
Old 05-13-2010, 03:55 PM   #5
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Re: Is MS diagnosis confused with Parkinsons?

thank you, WCL. Hearing that story is inspiring. I will be patient, continue the med until I retire, and then see what happens. I appreciate your sharing that.
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Old 06-29-2010, 08:39 AM   #6
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Re: Is MS diagnosis confused with Parkinsons?

Hi Pens. I was diagnosed with MS 19 years ago. My energy is poor but I can still do the things I used to be able to do. I've had only minor flare-ups. Like you, I was diagnosed with relapsing-remitting MS. This is not the sort of MS which leads to inability to walk (that sort is called 'progressive'). The fact that you were diagnosed in middle age, while some are diagnosed as early as their teen years, is a good sign for you.

And another thing, --you said that your parents eventually experienced senility. Perhaps you mean dementia? Dementia is common in PD but is not an MS symptom, though some who develop MS early in life can develop difficulties with short-term memory.

I would rather have MS than PD, myself. And by the way, if you don't care for the injections, you could just say 'forget it'. I've never taken any of the injectable drugs. There is indeed life after the MS diagnosis. The most toxic thing that happened to me was being handed the diagnosis -- took me almost three years to get over the alarm and panic and start to notice I was doing all right.

You mentioned fearing blindness, I think. I've had bouts of double vision, blurred vision, and a scotoma (small hole in my field of vision) and I too feared blindness. Then I read that blindness is rare in MS. Your case sounds a lot like mine. I stopped fearing blindness a long time ago. They do put a fright into a person with that ol' MS diagnosis, don't they?

Looseknit

Last edited by looseknit; 06-29-2010 at 08:45 AM.

 
Old 07-02-2010, 05:56 PM   #7
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Re: Is MS diagnosis confused with Parkinsons?

Loose Knit -
thank you so much for responding ... you have exactly identified what i have allowed to happen to myself ... and your words give me confidence that I can undo some of that damage.

I accept that I have lesions on the brain and spine, and o-bands in the spinal fluid, and that those signs indicate MS. But I believe that the medication I have accepted does more harm than good, emotionally and physically.

You are right - the label is, for me, worse than the symptoms. My symptoms no longer remit ... they are tolerable, somewhat limiting but haven't taken me out of the classroom yet. I have only three years to go 'til retirement. I have decided to deny the label RRMS, consider SPMS as a possibility, but expect to eventually have PD, as both my parents did. And they both lived long lives without this medication, without a whisper of MS, because they didn't have those tests years ago ... in their elder years, they were limited by pd, and my mother also by alzheimer's. I'm just 60, and will shelve those worries for those years, as you and others have suggested.

I will see my neurologist next week ... will tell him of my choice to reconsider this either spms or pd, and my plan to begin decreasing and eventually stopping the medication meant for rrms. Whether he agrees with me or not, I will begin the new year in school with a "revised diagnosis" ... very early stage pd, no worries for at least another decade, long after I retire. I'll attribute my current symptoms, when they are too tiring to hide, as being normal for a woman in her sixties. My close friends at work know of the ms ..., parents and students do not, and will have no need to as I'll be gone before the pd limits me ... and so I wil work guilt-free, accepting whatever help is offered, and helping wherever I can in return.

I'm going back to living. No more iffy treating. My husband will be with me when I talk with the neurologist. He will support my discussion ... he always has. I am blessed with him. I reject the RRMS label, without apologies. It is not worth the trouble it causes.

Thank you, again, for your common sense. I needed that boost of courage.
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Old 07-03-2010, 07:38 AM   #8
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Re: Is MS diagnosis confused with Parkinsons?

Dear Pens. I was so glad to read your reply. It brought tears to my eyes. I recall so clearly how dismayed I was when first diagnosed with MS and how I would have done anything the doctors suggested. Good luck with your neuro appointment. You don't have to have a progressive MS diagnosis to justify going off the medication -- sorry, I don't know your story exactly so I don't know if changing your 'category' would go down well the the neurologist. The injectable medications have been studied more in relapsing-remitting MS than in progressive MS, perhaps because the results are more likely to look good in r-r MS and so are more likely to be prescribed in r-r MS Please stick to your guns when you see the neuro and let me know how it goes. We are not a medical dictatorship -- not yet, anyway.

Another thought: my diagnosis was and still is relapsing-remitting MS. I was diagnosed before the injectable drugs came on the market. They were first available in the US (I live in Canada) and I was ready to break into my life savings to obtain it from across the border. I asked my neurologist about the wisdom of this and she replied that she thought it unnecessary to start on beta-interferon, given that I had infrequent relapses.

It seems that now there is no waiting period to see if a person's relapses are infrequent. The latest 'conventional wisdom' seems to be that everyone with r-r MS should be started on an injectable drug right away. So much for common sense and prudence, eh? You might need to be prepared to go in with a hard-headed 'I'll take that drug no more' attitude. It's your body, your life. Lorraine.

Last edited by looseknit; 07-03-2010 at 07:48 AM.

 
Old 07-03-2010, 08:14 AM   #9
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Re: Is MS diagnosis confused with Parkinsons?

Quote:
Originally Posted by looseknit View Post
You don't have to have a progressive MS diagnosis to justify going off the medication -- sorry, I don't know your story exactly so I don't know if changing your 'category' would go down well the the neurologist. Please stick to your guns when you see the neuro and let me know how it goes. We are not a medical dictatorship -- not yet, anyway.
The latest 'conventional wisdom' seems to be that everyone with r-r MS should be started on an injectable drug right away. So much for common sense and prudence, eh? You might need to be prepared to go in with a hard-headed 'I'll take that drug no more' attitude. It's your body, your life. Lorraine.
Bless you! I will be strong, both my husband in person and my dad in spirit will be with me ... Canada is the land of common sense ... my grandmother came through Montreal from Ireland ... My father in law through Quebec from France, and my other grandparents were from Scotland ... and so I, too, value common sense, lasting love, and education.

I'm going to sign off now ... will check in now and then but probably won't post ... busy writing the script for the next three years of my teaching ...

Sending prayers for you and for us all.
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Old 07-22-2010, 07:28 PM   #10
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Re: Is MS diagnosis confused with Parkinsons?

Hello again, Well, for all my bravado, I did not hold my own with the neurologist ... he thinks I ought to continue with the nightly injections ... I had the tests I have each summer, and will hear results from him in a few days, usually over the phone ... and I will go, as he has suggested, to a city hospital with an MS center to confirm his diagnosis of RRMS.

I am disappointed in myself ... accepting this continued painful treatment, being the patient patient again, going along with the doctor's diagnosis rather than with my own belief...not trusting my own knowledge of myself and of my family.

But I have done one thing for myself. I have signed up for the NIH PD Risk study advertised on this page, and have been accepted, at least at a preliminary level. Participating in the 7 year study will not "benefit" me, but will optimistically help doctors recognize PD "biomarkers" in people at risk for genetically connected PD. I care about my children and grandchildren, and watched my parents and grandmother and uncles decline without early PD intervention ... though certainly at an older age than I am at now.

I am not sure I can continue the RRMS meds as directed ... it feels like a punishment undeserved ... but I know that i will expect myself to try. In the meantime I can, on my own, pursue this PD study in an effort to make things better for the next generation.

Thanks for your patience in allowing me to stop in here ... this board feels more natural to me. I'm not able to add much in terms of PD treatments, but I can offer moral support, and ask for such from all of you.
It would not bother me nearly as much to be diagnosed with PD as it has with MS ... I know PD, its scope and its timeline. MS is horribly unpredictable, and with it, I feel totally disconnected from my family's heritage and history. No one else in this very large family has been diagnosed with MS. Several have had PD. I fear MS more than PD ... the devil I know is not as bad as the devil I don't...

I notice that there have been no responses to the five posts above ... I'm sure you are all busy dealing with what you are dealing with ... but if you can answer any of those other posts, please chime in to help them.
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Old 07-22-2010, 08:51 PM   #11
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Re: Is MS diagnosis confused with Parkinsons?

Hi Pens. I've just been looking at the British Medical Journal on-line. Their June 5, 2010, issue gives the results of UK use of the interferon beta drugs and glatiramer acetate (Copaxone) in MS. The results show that those using the drugs developed more disability than historical controls (ie, a control group from the past, not taking the drug). If you just go to that issue of the BMJ and enter 'multiple sclerosis', you'll see the key article by James Raferty plus two other articles commenting on these findings.

One weak defense of these drugs is that for some reason MS has become a more aggressive disease over time, and that's why those who didn't take the drugs in the past did better than those taking the drugs now. I see no reason to accept this, given that these drugs were developed on the unproven assumption that MS is an auto-immune disease, and the initial studies used mere 'surrogate' endpoints -- MRI findings and relapse frequency -- instead of real endpoints -- death and disability. So these drugs were on shaky ground to begin with and if it seems, based on aggregated patient results, that they don't work...well, I'd say that means they don't work and the disease should not be blamed.

I see no reason to have faith in any drug put out on the market for MS. There's too much money in it and MDs are too easily influenced by drug reps. I recommend Vernon Coleman's book 'How to stop your doctor killing you'. Unfortunately he doesn't tackle the MS drug issue. Take care.

 
Old 07-28-2010, 07:15 AM   #12
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Re: Is MS diagnosis confused with Parkinsons?

Thank you for the information and source. I will ask about this study when I go to the MS center this fall ... and will ask about secondary vs relapsing remitting ... as nothing seems to change, better or worse ... and I am pursuing information on early stage PD as compared to mild ("benign") ms ...
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