I'm so confused

February 9, 2002

I was diagnosed with CMT Type 2 for the first time 17 months ago. Prior to that

for 5 years, my diagnosis was Hereditary PN. The diagnosis of CMT came from a

team of neurologists at the PN clinic at the University of Chicago. Comments in

the medical report they prepared are " We consider a sensorimotor anxonal

neuropathy to explain the symtoms. We will think of hereditary neuropathy,

especially CMT type 2, although the asymmetry of the weakness of the lower

extremities is atypical for that diagnosis. " Could someone in the group explain

to me what that means? I had never heard of CMT before then. I was in denial,

because I didn't seem to have some of the " classic " symptoms of high arched

feet, etc. However, since I discovered , and reading others' stories, I am

CONVINCED I have CMT. All that my regular neurologist would say on my last

visit a few weeks ago, is that he wouldn't necessarily DISAGREE with that

diagnosis. I believe my symptoms of muscle fatigue, muscle cramps, inability to

walk more than a few yards without the assistance of my cane, being unable to

write, button, zipper, or any other functions with my hands after limited use,

lack of balance, poor gait, hand tremor, and so on, are indicative of CMT. Then

tonight, I read Gretchen's e-mail about HNPP defined, and how the symptoms may

be very similar to CMT, but the illness is actually the exact opposite. Since

my illness has worsened so much in the last 10 months or so, I just don't know

what to believe any more. And since there is no genetic testing for CMT2, how

do I know what I have? I'm the youngest of 5 children (I'll be 44 next

Wednesday), none of whom display any symptoms, and my parents both died before I

was diagnosed. My husband and I have 3 children ranging in age from 15 to 24.

They exhibit no symptoms (yet), and I hope and pray they never do. But in the

meatime, I remain confused to the point of depression. Being part of this

group has truly been an enlightening experience, but do I really have CMT? I

thought I did, until tonight when I read about HNPP. Am I part of the wrong

group? I know this message is long, and maybe has been incredibly boring for

many of you, but if anyone out there can help me, I would be eternally grateful.

June 9, 2007

Hi Kathy

Sorry to hear your pain and frustration. I think if a DR told me it was all

in my head I would find a new one and/or asked what he meant. Do you keep a

pain/illness journal, because I find if you write your symptoms down and

then take them to the DR that may help you get your point across.

I don't know that much about Lupus though I know it can really be serious,

you may be in remission? Also don't know why the DR would prescribe

medications if it was all in your head?

Hang in there. Sometimes it takes years to find things out. I know I had

to get so sick I could of died before they finally figured out my

illnesses. Pray that doesn't happen to you, I have felt like I was nuts

before they figured me out physically. Mentally, who knows. LOL I find

humor helps me get by when I am frustrated. You can post here and not be

judged. I find that a good thing as there aren't many places that offer

that kind of support.

TTYL (talk to you later)

Laurie R.

On 6/9/07, kathy <care4u1980@...> wrote:

>

> Hi! my name is kathy,i'm 50 yrs old and i was diagnosed with Lupus in

> April this year,from a blood test,but thats the only proof of

> lupus,could it be something else?i have been thru a series of

> tests,sleep studies,etc....I saw a rheumatologist,2 of them,neither of

> which thought i had it,saying its all in my head.My doctor has put me

> on prednisone ,cymbalta,ambiencr,i have high blood pressure,high

> cholesterol,can't sllep w/out ambien,if i don't take the prednisone i

> have pain in my arms again.How do i know for sure if its Lupus?

>

June 9, 2007

Hi Kathy,......Sorry your going through so much stress. You will find

some answers here. I don't know much about the tests, it took awhile

before being diagnosed with RA. I have high blood pressure and high

cholesterol too. I have problems with most of the meds for

cholesterol, so I am on nothing at the moment. I am trying to find a

more natural approach for it. Glad you have something for sleeping.

I have problems sleeping. You would think all the meds I take, I

would be out, but not the case. I am up until 3-4 in the morning. I

took Prednisone for awhile, and I could go for a long time without

sleep, just didn't work for me. If you need a friend, I'm here, just

email me anytime. Take care, and so glad your here, Tawny

June 12, 2007

Hi Kathy,

If the Drs diagnosed it do to a blood test and started the meds, they are

the ones confused. Lupus can be very serious but it can also be managed ,

like most other chronic illnesses, if the good Doc continues to say its in

your hed..,. Get a new Dr.

Heidi M

On 6/10/07, Nina <ncampbell@...> wrote:

>

> kathy wrote:

> >

> > >Hi! my name is kathy,i'm 50 yrs old and i was diagnosed with Lupus in

> > April this year,from a blood test,but thats the only proof of

> > lupus,could it be something else?i have been thru a series of

> > tests,sleep studies,etc....I saw a rheumatologist,2 of them,neither of

> > which thought i had it,saying its all in my head.My doctor has put me

> > on prednisone ,cymbalta,ambiencr,i have high blood pressure,high

> > cholesterol,can't sllep w/out ambien,if i don't take the prednisone i

> > have pain in my arms again.How do i know for sure if its Lupus?

> >

>

> That doesn't even make sense. If you were diagnosed by a blood test,

> they put you on meds, why in the world would they say it's all in your

> head? Sounds to me they're the ones with the head problems!

>

> Nina

>

> >

>

July 8, 2007