Re: Dealing with limbo (DAWN)

[Guest guest]

Hi Dawn:

I've been wondering how things are going for you now? By now your new insurance has started so have you been successful in finding a new neurologist yet? Maybe you can even go back to your previous GP now?

I think all MSers have been told they are imagining their symptoms -- if we aren't actually TOLD that then we have gotten the feeling that people think we are attention-seeking nuts. LOL

How are you feeling now?

Sharon (MSersLife creator/owner)

“One minute it's a giant cabbage and the next, ka-boom! You've got cole slaw all over you." V.R. , Palmer, Alaska, where Cabbages grow hugeDawn wrote:

Hi all. It's been quite some time since I've really posted anything except one or two responses. I haven't wanted to burden anyone with what I've been feeling. I hope no one minds if I vent. The first time MS was mentioned to me at all was early 2001 and I was told not to worry about it because is was seriously unlikely and some bloodwork was done and my GP said the numbness, tingling and pain was just signs of me getting older and that I had a slight case of carple tunnel in my left hand (pardon my spelling, it is horrid, ). Then in late 2002 I temporarily lost the ability to see any colors. Another GP in the same office sent me to have an MRI and did more blood work. I knew something was wrong when the radiologist called my dr. in the middle of the MRI. A couple days later my Dr. called and said she was sorry but it looked like

I have MS, she did a ton of blood tests, spinal tap, you name it. She said she had to rule out every other possibility, which she did. Then she sent me to a neuro who talked to me for 20 mins said the leasions were nothing and that I was fat and needed to lose weight and walked out. He sent my GP a letter and it was so rude that she called the radiologist while I was there, told him what was said and then said that the neuro was a quack and we would find another one. Which we did. We found a specialist for MS. I saw him twice, he ran a bunch of tests and said that my history was consistant with MS but the MRI was inconclusive because though there were 8 or 9 leasions the were small and the majority were center where the two sides of my brain communicate (I have no clue what the significance of that it?). He said he didn't want to start me on medications yet because the medications can be as much of a problem as the MS itself

and that he wanted to see me in 3 months. By the time for my next appointment my insurance no longer covered him and I haven't been able to find another neuro. The GP that original found it switched offices and my insurance doesn't cover her anymore either. I'm stuck with the GP that said it was from my age (I just turned 38 in March, come on already). So when I have a problem and go to him he just blows it off and acts like I'm making it up. My memory has been seriously affected, my balance is a joke and I'm tired all the time. This heat is a nightmare too. I didn't even know what MS was or what the MS stood for until I started doing research after I was told I had it and I'm so tired of people looking at me like I'm making it up or that I just want attention. I really don't want attention at all, I feel like a sideshow freak at times and I'm scared. My husband has a new job and the new insurance starts in August. He keeps

telling me to hang in there, we'll find a neuro then but I've been told so many times that it's all in my head that I'm scared to go to the neuro now. I'm in pain everyday in my back and legs. My eyes have been hurting again and things get blurry for now reason. I talked to my eye doctor about my vision problems and he said that it was definitely an MS problem. He told me that it is possible that I may lose my eyesight but not to panic because that happens often to MS patience and quite often it comes back. I've been crying a lot lately and just feel lost. I know there's nothing anyone can do but I have felt so alone and scared and that no one understood. I printed out the "spoons story" and our older children read it and my husband and that helped some. Now when I'm feeling up to doing things or I wrestle with our son it's become a joke, they'll tell me "You realize that's costing you about 4 spoons" and we'll all laugh.

I'm sorry for carrying on so long. It's all so frustrating and I haven't really talked to anyone about it. Thanks for letting me vent.May the blessings of love shine upon you always.Dawn

[Guest guest]

Hi Sharon,

Our new insurance is suppose to start on the 11th of this month so

I'm hoping things will improve greatly then. I'm writing and email

to the neuro (the specialist) to see if there's anyone he can

recommend until I'm able to get back to him. My hubby has been

talking about trying to get me into a local MS support group, at the

same time our oldest daughter and I said in unison that I talk to

you and all the other wonderful people here. The look on his face

was priceless, lol. I've been wanting him to join the group so that

he can learn about this too. Would that be ok? I don't want him to

be scared anymore and worry constantly. This entire thing is scary

but the more we learn together the better I think we'll be able to

handle things and help our children to not worry so much.

I thank you more than words can say for creating this group and

bringing all of these wonderful people together. I would have been

totally lost without all of you.

Dawn

May the blessings of love shine upon you always.

> Hi all. It's been quite some time since I've really posted

anything

> except one or two responses. I haven't wanted to burden anyone

with

> what I've been feeling. I hope no one minds if I vent. The first

> time MS was mentioned to me at all was early 2001 and I was told

not

> to worry about it because is was seriously unlikely and some

> bloodwork was done and my GP said the numbness, tingling and pain

> was just signs of me getting older and that I had a slight case of

> carple tunnel in my left hand (pardon my spelling, it is

> horrid, ). Then in late 2002 I temporarily lost the ability to

> see any colors. Another GP in the same office sent me to have an

MRI

> and did more blood work. I knew something was wrong when the

> radiologist called my dr. in the middle of the MRI. A couple days

> later my Dr. called and said she was sorry but it looked like I

have

> MS, she did a ton of blood tests, spinal tap, you name it. She

said

> she had to rule out every other possibility, which she did. Then

she

> sent me to a neuro who talked to me for 20 mins said the leasions

> were nothing and that I was fat and needed to lose weight and

walked

> out. He sent my GP a letter and it was so rude that she called the

> radiologist while I was there, told him what was said and then

said

> that the neuro was a quack and we would find another one. Which we

> did. We found a specialist for MS. I saw him twice, he ran a bunch

> of tests and said that my history was consistant with MS but the

MRI

> was inconclusive because though there were 8 or 9 leasions the

were

> small and the majority were center where the two sides of my brain

> communicate (I have no clue what the significance of that it?). He

> said he didn't want to start me on medications yet because the

> medications can be as much of a problem as the MS itself and that

he

> wanted to see me in 3 months. By the time for my next appointment

my

> insurance no longer covered him and I haven't been able to find

> another neuro. The GP that original found it switched offices and

my

> insurance doesn't cover her anymore either. I'm stuck with the GP

> that said it was from my age (I just turned 38 in March, come on

> already). So when I have a problem and go to him he just blows it

> off and acts like I'm making it up. My memory has been seriously

> affected, my balance is a joke and I'm tired all the time. This

heat

> is a nightmare too. I didn't even know what MS was or what the MS

> stood for until I started doing research after I was told I had it

> and I'm so tired of people looking at me like I'm making it up or

> that I just want attention. I really don't want attention at all,

I

> feel like a sideshow freak at times and I'm scared. My husband has

a

> new job and the new insurance starts in August. He keeps telling

me

> to hang in there, we'll find a neuro then but I've been told so

many

> times that it's all in my head that I'm scared to go to the neuro

> now. I'm in pain everyday in my back and legs. My eyes have been

> hurting again and things get blurry for now reason. I talked to my

> eye doctor about my vision problems and he said that it was

> definitely an MS problem. He told me that it is possible that I

may

> lose my eyesight but not to panic because that happens often to MS

> patience and quite often it comes back. I've been crying a lot

> lately and just feel lost. I know there's nothing anyone can do

but

> I have felt so alone and scared and that no one understood. I

> printed out the " spoons story " and our older children read it and

my

> husband and that helped some. Now when I'm feeling up to doing

> things or I wrestle with our son it's become a joke, they'll tell

> me " You realize that's costing you about 4 spoons " and we'll all

> laugh. I'm sorry for carrying on so long. It's all so frustrating

> and I haven't really talked to anyone about it. Thanks for letting

> me vent.

> May the blessings of love shine upon you always.

> Dawn

>

>

>

>

>

[Guest guest]

Hi Dawn:

It would be fine for your husband to join the group if he wants to. I know we have at least one other spouse who belongs to MSersLife.

MS is scary. The more education you have about MS -- the less frightening it is. Most local chapters of the National MS Society have support groups for spouses too. Maybe you should consider going to a local support group. I used to run an in-person support group through the National MS Society here in Arizona. It's a great way to meet people in your area with MS and hear their experiences with the local doctors and other issues.

Hang in there!

Sharon

Dawn wrote:

Hi Sharon,Our new insurance is suppose to start on the 11th of this month so I'm hoping things will improve greatly then. I'm writing and email to the neuro (the specialist) to see if there's anyone he can recommend until I'm able to get back to him. My hubby has been talking about trying to get me into a local MS support group, at the same time our oldest daughter and I said in unison that I talk to you and all the other wonderful people here. The look on his face was priceless, lol. I've been wanting him to join the group so that he can learn about this too. Would that be ok? I don't want him to be scared anymore and worry constantly. This entire thing is scary but the more we learn together the better I think we'll be able to handle things and help our children to not worry so much. I thank you more than words can say for

creating this group and bringing all of these wonderful people together. I would have been totally lost without all of you.DawnMay the blessings of love shine upon you always. > Hi all. It's been quite some time since I've really posted anything > except one or two responses. I haven't wanted to burden anyone with > what I've been feeling. I hope no one minds if I vent. The first > time MS was mentioned to me at all was early 2001 and I was told not > to worry about it because is was seriously unlikely and some > bloodwork was done and my GP said the numbness, tingling and pain > was just signs of me getting older and that I had a slight case of > carple tunnel in my left hand (pardon my spelling, it is > horrid, ). Then in late 2002 I temporarily lost the ability to > see any colors. Another GP in the same office sent me to have an MRI > and did more blood work. I knew something was

wrong when the > radiologist called my dr. in the middle of the MRI. A couple days > later my Dr. called and said she was sorry but it looked like I have > MS, she did a ton of blood tests, spinal tap, you name it. She said > she had to rule out every other possibility, which she did. Then she > sent me to a neuro who talked to me for 20 mins said the leasions > were nothing and that I was fat and needed to lose weight and walked > out. He sent my GP a letter and it was so rude that she called the > radiologist while I was there, told him what was said and then said > that the neuro was a quack and we would find another one. Which we > did. We found a specialist for MS. I saw him twice, he ran a bunch > of tests and said that my history was consistant with MS but the MRI > was inconclusive because though there were 8 or 9 leasions the were > small and the majority

were center where the two sides of my brain > communicate (I have no clue what the significance of that it?). He > said he didn't want to start me on medications yet because the > medications can be as much of a problem as the MS itself and that he > wanted to see me in 3 months. By the time for my next appointment my > insurance no longer covered him and I haven't been able to find > another neuro. The GP that original found it switched offices and my > insurance doesn't cover her anymore either. I'm stuck with the GP > that said it was from my age (I just turned 38 in March, come on > already). So when I have a problem and go to him he just blows it > off and acts like I'm making it up. My memory has been seriously > affected, my balance is a joke and I'm tired all the time. This heat > is a nightmare too. I didn't even know what MS was or what the MS > stood for until I

started doing research after I was told I had it > and I'm so tired of people looking at me like I'm making it up or > that I just want attention. I really don't want attention at all, I > feel like a sideshow freak at times and I'm scared. My husband has a > new job and the new insurance starts in August. He keeps telling me > to hang in there, we'll find a neuro then but I've been told so many > times that it's all in my head that I'm scared to go to the neuro > now. I'm in pain everyday in my back and legs. My eyes have been > hurting again and things get blurry for now reason. I talked to my > eye doctor about my vision problems and he said that it was > definitely an MS problem. He told me that it is possible that I may > lose my eyesight but not to panic because that happens often to MS > patience and quite often it comes back. I've been crying a lot > lately and just

feel lost. I know there's nothing anyone can do but > I have felt so alone and scared and that no one understood. I > printed out the "spoons story" and our older children read it and my > husband and that helped some. Now when I'm feeling up to doing > things or I wrestle with our son it's become a joke, they'll tell > me "You realize that's costing you about 4 spoons" and we'll all > laugh. I'm sorry for carrying on so long. It's all so frustrating > and I haven't really talked to anyone about it. Thanks for letting > me vent.> May the blessings of love shine upon you always.> Dawn> > > > >

[Guest guest]

I'm the latter!! Especially since my Mother has MS. <gg>

Challis

Hi Dawn:

I've been wondering how things are going for you now? By now your new insurance has started so have you been successful in finding a new neurologist yet? Maybe you can even go back to your previous GP now?

I think all MSers have been told they are imagining their symptoms -- if we aren't actually TOLD that then we have gotten the feeling that people think we are attention-seeking nuts. LOL

How are you feeling now?

Sharon (MSersLife creator/owner)