Re: 42 year old with severe central and cortical atrophy question

[Guest guest]

Tim,

For several months, I have been lurking in the background reading posts. It was

refreshing to read yours, and I feel prompted to respond (my first post to this

group).

You wrote, " I do not believe MS is my disease, but is a symptom of something

else - I only wish I knew what was causing my MS. "

Long ago, in speaking with a Lyme disease specialist, he mentioned the term

Lyme-induced MS. Since then I have come to think of MS as a descriptive

diagnosis, a diagnosis that describes a set of symptoms that are commonly

associated with one another. Lyme disease can present with symptoms that can be

labeled MS-like. Since Lyme disease can have symptoms that are similar to and

called MS, Parkinson's, ALS, or CFS, then another underlying causative agent may

be able to do the same.

MS was my first diagnosis, but for me Lyme is the underlying cause. I pray that

you will find the underlying cause of your symptoms.

KC

> >

> > I just received an MRI with and without contrast with this outcome. Can

anyone give me input about what I may have? I was referred for an MRI from a

pain doctor, because I had MS symptoms. No lesions were found on my brain. I

live in a place that most of the Neurologists left town. We may be moving, I am

just too anxious to wait to see a Neurologist. Any information would help!

Thanks!

> >

>

[Guest guest]

According to the MS Society, 5 - 10% of people with MS don't have lesions but

are eventually diagnosed with MS through symptoms and other tests like lumbar

puncture and evoked potentials. On the other hand, it could also mean you don't

have MS.

Like Tim, I don't really feel like I know what " my MS " really is. I think there

are different causes in different people and different symptoms and it's all

called " MS " even though one person may have had " MS " for 20 years and had two

minor attacks and the next person may have had " MS " for a couple years and be

highly disabled. It seems to me these are different illnesses being lumped

together.

Also, there is absolutely no scientific evidence or studies to suggest that the

number of lesions correlates with the amount of disability a patient has, so I

don't know that counting lesions is a great way of assessing illness level. Yet

neurologists seem to like to do that anyway. It is something " concrete " in a

disease that is otherwise highly ambiguous.

I hope whatever you have, that you will get better, as some people are able to

do.

Zoe.

________________________________

To: mscured

Sent: Sat, April 30, 2011 3:19:42 PM

Subject: Re: 42 year old with severe central and cortical atrophy

question

It is possible that your brain may be clear but your spine may have lesions. In

my case, an MRI early on found no lesions so the hunt for my ailment continued

until another doctor ordered spine MRIs with contrast. The MS diagnosis

followed. However, I do not beleive MS is my disease, but is a symptom of

something else - I only wish I knew what was causing my MS.

[Guest guest]

KC,

My doctor tested me for Lyme three years ago. It was negative. I feel I have

to trust it, even though tests are known to be innacurate.

I tried antibiotics for 8 weeks with my GP last summer. Unfortunately it was

Doxycycline and now I hear Doxycycline is inneffective with Lyme.

What can you do? I feel so powerless.

It really appears that the majority of the medical community likes me just fine

with MS and do not have any desire to heal me. Most MSers I talk to feel the

same way. It was quite a shocking realization. I naively thought our advanced

medicine science was here to help the sick. It turns out they are just here to

get rich.

-Tim

> > >

> > > I just received an MRI with and without contrast with this outcome. Can

anyone give me input about what I may have? I was referred for an MRI from a

pain doctor, because I had MS symptoms. No lesions were found on my brain. I

live in a place that most of the Neurologists left town. We may be moving, I am

just too anxious to wait to see a Neurologist. Any information would help!

Thanks!

> > >

> >

>

[Guest guest]

,

Sounds like we have the same Lyme specialist.

Have you joined the CALDA Lyme discussion board yet?

http://www.lymedisease.org/

KC

> > > > >

> > > > > I just received an MRI with and without contrast with this outcome.

Can anyone give me input about what I may have? I was referred for an MRI from a

pain doctor, because I had MS symptoms. No lesions were found on my brain. I

live in a place that most of the Neurologists left town. We may be moving, I am

just too anxious to wait to see a Neurologist. Any information would help!

Thanks!

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