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Old 04-10-2008, 01:24 PM   #1
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The difficulties of diagnosis

Reading how difficult it is for some to finally achieve a diagnosis of "Yes" or "No" when it comes to MS, it saddens me. I was there myself, however I count myself lucky that I didn't go through what some have and I have been reading.

Of course diagnosis is often a multi-step process (MRIs, blood work, spinal tap/lumbar puncture) and the McDonald's criteria, however getting to the point of having these tests completed for some is a true nightmare.

Does our health and getting answers about our health have to be such an uphill battle? I find that patients have to be too proactive to get to a diagnosis, and that it is often met with frustration and increased stress. At a time when the patient may be experiencing symptoms or a relapse, this isn't fair.

While there are plenty of MS support groups out there, is there currently a place where those who are not currently diagnosed, or waiting on a diagnosis can turn to for help and support? Of course the HealthBoards is a wonderful community for both of these, but it's a challenge for sure at a local level.
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RRMS Dx 03/08

 
Old 04-10-2008, 04:32 PM   #2
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Re: The difficulties of diagnosis

I don't know if there are local support groups for those in limbo, but I'd hope that they'd be welcomed at MS groups anyway.

I feel lucky to have gotten a dx in 5 or 6 months, whatever it was. If I didn't have the kind of PCP I have, I would not have. I know that for certain. He just knew something was wrong and had me get a million tests. When I started becoming unsure of myself and thinking it was in my head, and wanted to give up, he wouldn't let me.

The doctor I went to in 2002 after I started fainting all the time and losing sensation gave me some heart tests and an MRI. The MRI showed two lesions and he didn't even tell me. He addressed my husband while asking questions about me, instead of me! That guy would have never found a diagnosis for me.
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Old 04-10-2008, 05:47 PM   #3
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Re: The difficulties of diagnosis

I can tell you from experience that the stress of limbo does not help at all with my symptoms. I really find it unacceptable that a consult letter from a Neurologist back to your GP in Canada Takes months.

The support from the boards is definately helpful. I may not post much but it does help that I can read posts that I can relate to.
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~LG~
dx Charcot-Marie-Tooth Disease October 2008. Fibromyalgia Jan 2010. Vit D Deficient Feb 2010. Osteopenia March 2010. Suspicion of Avascular Necrosis - Testing to be completed.

 
Old 04-10-2008, 06:14 PM   #4
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Re: The difficulties of diagnosis

Quote:
Originally Posted by lynxgal View Post
I really find it unacceptable that a consult letter from a Neurologist back to your GP in Canada Takes months.
Wow, seriously? Now I am glad I didn't have a GP hearing this and had to wing it on my own. I wasn't aware this was the 'standard'.

Have you made progress with your diagnosis? I noted in your sig it says you've been in limbo.
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Old 04-10-2008, 06:47 PM   #5
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Re: The difficulties of diagnosis

Does our health and getting answers about our health have to be such an uphill battle? I find that patients have to be too proactive to get to a diagnosis, and that it is often met with frustration and increased stress. At a time when the patient may be experiencing symptoms or a relapse, this isn't fair.

Nenu, you wrote these words and no truer words have been spoken. It IS a shame...I was one of the fortunate ones who was dx in under 10 days- but with that didnt come a whole lot of time to dwell on what MS would mean to me (probably a good thing) and instead came instant SHOCK and an enormous fight to ward off both depression and fear. Not only me, but my husband and family were affected by this "out of the blue" diagnosis.

Being in the healthcare field, I have alot of first hand experience with both chronic and fatal diseases...what we go thru with healthcare in the US is nothing compared to Canada and some of the other countries....Ireland, is one which comes to mind- as they have it even tougher at times to get answers, tests and information with their health care system. Those who tout the advantages of Socialized Medicine arent aware of just how tough it is for those members to actually get anywhere with physicians....going "private' as they often are forced to do is very expensive- yet staying in the system is so incredibly time consuming and frustrating....absolutely what you said about the stress this induces and combining it with an actual excaberation or relapse, is almost criminal to put anyone thru...

So whats the answer? In the USA its boards like this, and organizations which addresss these issues. I know of one organization which just this week started a job hunting section specifically for people with MS...but that same organization has an international order as well.... But help is available to those who both have a disease or are leaning towards thinking they have one...One must utilize the resources which are out there. People really need to dig and contact local organizations to get pointed in the right direction. I know of a woman, locally, who has MS who just had financial help in having wheelchair ramps put into her home due to her MS. There are local places sponsoring reduced (very recuced) rates on exercise programs (so do the local hospitals) for people with disabilities as well as hospital sponsored talks, which are usually free. My company provides free transportation to those in need who utilize wheelchairs to get to some of these events. My point? Im rambling, sorry- is that although this is probably the most difficult time in anyone's life- there really is help out there, if resources are used.

As for being proactive in getting doctors to address our needs. Its called freedom of speech. I hate to say it that way because it sounds negative, but it isnt. We live in a society where we have the ability to agree or disagree with anything. Fortunately for us in the USA, we also have the ability to report bad behavior to National Boards (medical) and to choose our own doctors in most cases... I realize that insurance sometimes limits this, but Ive not run across any insurance plan anywhere which only has one doctor in each speciality..there are always choices, even if they inconvience us.

The idea of having to "fight" for our rights is nothing new to the American People...unfortunately, this is why our legal system is in place. But, with this right, comes the right to demand answers....if they arent forthcoming, there is always the choice to find someone who will answer our need- or at worst case scenario, take legal action. Stressful? You bet....but again, this is our right, as human beings....if we dont take our rights seriously, why should anyone else? In order to find answers, one must do their homework. In order to get answers, one must ask the right questions and in order to accept no, one must be able to qualify why that answer is no. Does that make sense?

I know I sound sort of political here, and I dont mean to...my heart goes out to each and every person who has ever been scared of a medical disorder and to everyone who is fighting to get answers; however with that said, fighting to get answers is just that- a fight. One which we must be preprared to support and be diligent about. Its easy to forget that 1/3 of the world is starving, or at war when its not so close to home...but being here on healthboards is a healthy reminder every day of what WE are going thru...and in order to help those who are so close to our hearts, we really have to continue to press our medical community for answers daily. Go to hear lectures and hear whats going on- get involved in both local and national organizations- volunteer to do whatever it is you can do to show support-and most of all, continue to show up here for as long as you are able, so that you can continue to be there for the next newbie who needs an ear or some direction!
I love everyone here. Ill never forget how healthboards got me thru my initial shock and dx....my only goal is to help one person like I was helped. I hope that I have...
nikki
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RRMS- dx 05

Last edited by MSNik; 04-10-2008 at 06:51 PM.

 
Old 04-10-2008, 07:04 PM   #6
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Re: The difficulties of diagnosis

That is an excellent post Nikki, I was hoping you'd write something on the topic, but you really outdid yourself.

It's true, each country is so different when it comes to, like you pointed out, freedom of speech. In addition to the health care systems in each country being different, and the governments, and organizations to help with those affected by diseases...

It actually puts a smile on my face to see people posting here who have yet to receive their diagnosis. Why? Because I didn't know to post here, or think about it, because I had no idea what I had. It warms me to know that they have found this group of individuals who can help them through an emotional time, and were keen enough to suspect MS. Even if they eventually test negative for MS, the support here is unbiased to the final diagnosis.

I found this wonderful community during my diagnosis process. The support here would have been the best thing for me, and probably resulted in much less stress, had I known when the symptoms first began, or even after several months of living with them. Before finding you folks, I felt alone. Feeling alone and ill was scary. No one could remotely understand what I was going through around me. It was only here that I could finally share with and read about people who could understand what it was like. I haven't found another forum like this one, period.
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RRMS Dx 03/08

Last edited by Nenu; 04-10-2008 at 07:04 PM.

 
Old 04-10-2008, 07:12 PM   #7
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Re: The difficulties of diagnosis

You wont find another forum like this one! Were special. Nenu, youre special..everyone here is special...thats what makes us work. Your right about being happy when people do find us...I feel the same way. I didnt have the chance to research MS or find us when I got my dx- happened too fast; but I did start out researching the very day that I was given a dx and found this board very quickly. Hopefully others will, too.

Do what I do....be here for the next person who needs us....if the cycle continues, we will continue to help others like you and I both feel we were helped.

And remember to spread the word.....you dont have to tell people you have MS, but there are an awful lot of ways to stay educated and help educate about MS in your own backyard....the more WE give the more WE get. Its a fact. Look at how much we both got here, and we never left the comfort of our own homes!

Love this place~ I really do.
hugs Nenu..
big ones!
N
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Old 04-11-2008, 04:16 AM   #8
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Re: The difficulties of diagnosis

Quote:
Originally Posted by Nenu View Post
Wow, seriously? Now I am glad I didn't have a GP hearing this and had to wing it on my own. I wasn't aware this was the 'standard'.

Have you made progress with your diagnosis? I noted in your sig it says you've been in limbo.

Hi Nenu,

I have seen 2 neurologists. First one did not take me seriously. The second one did but as I was not in a for lack of a better word "relapse" we are in the wait and see what happens mode.

Signs that have been noted: positive romberg sign, loss of vibration sensation in my right big toe. Balance problems with eyes open, and some of my reflexes where not right. Not sure what they saw...they didn't share that info....that's why I am waiting on the report back from the Neuro. He was suppose to give my GP suggests on meds for lingering sx. That was 7 weeks ago.
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dx Charcot-Marie-Tooth Disease October 2008. Fibromyalgia Jan 2010. Vit D Deficient Feb 2010. Osteopenia March 2010. Suspicion of Avascular Necrosis - Testing to be completed.

 
Old 04-11-2008, 11:49 AM   #9
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Re: The difficulties of diagnosis

Wow, I'd be making some calls to figure out where the info is! 7 weeks?!

I know all too well about seeing a neuro that doesn't take you seriously
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Old 04-11-2008, 01:28 PM   #10
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Re: The difficulties of diagnosis

Oh I've made calls. On Monday I called my GP and told them the Neuro's ofc had not returned any of my calls. They said they would look after it. Now I haven't heard from them all week. When I go in to see my GP next he better not ask me..."have you been under any stress lately" I might not be able to control myself. LOL
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~LG~
dx Charcot-Marie-Tooth Disease October 2008. Fibromyalgia Jan 2010. Vit D Deficient Feb 2010. Osteopenia March 2010. Suspicion of Avascular Necrosis - Testing to be completed.

 
Old 04-11-2008, 01:44 PM   #11
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Re: The difficulties of diagnosis

I admire your patience very much. When will doctors stop blaming everything on stress? Geez, who isn't stressed out?

Maybe you could ask your doctor to contact the neuro. It's unacceptable that they haven't called you back.

Keep us updated!
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Avonex started 11/07,
Stopped 4/10 due to no insurance.

 
Old 04-11-2008, 01:55 PM   #12
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Re: The difficulties of diagnosis

Quote:
Originally Posted by lynxgal View Post
Oh I've made calls. On Monday I called my GP and told them the Neuro's ofc had not returned any of my calls. They said they would look after it. Now I haven't heard from them all week. When I go in to see my GP next he better not ask me..."have you been under any stress lately" I might not be able to control myself. LOL
If they ask about stress, I'd be giving them the sarcastic "You THINK?" with the eye roll treatment
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Old 04-11-2008, 01:59 PM   #13
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Re: The difficulties of diagnosis

Not sure I could be that controlled right now. LOL. Seem to be developing some nasty mood swings. Monday if I haven't heard from anyone they are going to be hearing from me.
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~LG~
dx Charcot-Marie-Tooth Disease October 2008. Fibromyalgia Jan 2010. Vit D Deficient Feb 2010. Osteopenia March 2010. Suspicion of Avascular Necrosis - Testing to be completed.

 
Old 04-11-2008, 02:05 PM   #14
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Re: The difficulties of diagnosis

Quote:
Originally Posted by lynxgal View Post
Not sure I could be that controlled right now. LOL. Seem to be developing some nasty mood swings. Monday if I haven't heard from anyone they are going to be hearing from me.
Your right to know about your health, and you should put your foot down, hard.

Best of luck hun. Enjoy the weekend as much as possible (hopefully you aren't going to have ugly weather like we're going to have).
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Old 04-11-2008, 03:27 PM   #15
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Re: The difficulties of diagnosis

I remember going for my somatosensory tests and the guy administering the tests started shouting at me "You must relax"....and the he asked me "Is there something you're worried about".........do you think dumbo? :-)

Pays to have a sense of humor in this!

 
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