FAQ/Help |
Calendar |
Search |
Today's Posts |
|
![]() |
#1 | |||
|
||||
Senior Member
|
I posted his letter under my stomach bug post.
__________________
Hi, I'm Julie and mommy to 7 little kids (ages 4 to 11). . DX with Fibromyalgia, 1998 DX with MCS (Multiple Chemical Sensitivity), June 2008 DX with Food Allergies, wheat, sesame, fresh pineapple . |
|||
![]() |
![]() |
![]() |
#2 | |||
|
||||
Senior Member
|
I went to your other thread and read his note. It doesn't sound like he is trying to dump you at all to me. It actually sounds like a reasonalbe response. At this point in time, he doesn't know what your dx is, so he can't cure you. However, he states that he is willing to treat your sx, but he isn't sure if that is what you want.
He is being honest here that he is stumped, but it sounds like he is willing to work with you at least on sx relief since he can't figure out what is causing all of this. Sounds like he put the ball back in your court. If you want sx relief, I would answer his e-mail back with a note to that respect. I would say something like "Thank you very much for taking the time to get back to me. I understand that there is no quick answer for my case, but I would very much appreciate your help in getting my most bothersome sx under control."
__________________
Dx: CNS Demyelinating Disease (2005) Take me back to days full of monkeyshines Bouncin' on a bubble full of trouble in the summer sun Keep your raft from the riverboat Fiction over fact always has my vote And wrinkles only go where the smiles have been... Jimmy Buffett from "Barefoot Children in the Rain" . |
|||
![]() |
![]() |
![]() |
#3 | |||
|
||||
Senior Member
|
Quote:
Thank you, At my last visit with him he sounded like he was trying to dump me also, he had said he didn't know what was going on with me and that I needed to find a good PCP that he could treat some of my SX. So I asked him what SX he would treat and how and he said he would give me Cymbalta for the anxiety and that might help with my pain also. This is the only SX he was will to treat. I asked him about some of my other SX and he said he didn't know why I was getting them so he didn't have a way to treat them.
__________________
Hi, I'm Julie and mommy to 7 little kids (ages 4 to 11). . DX with Fibromyalgia, 1998 DX with MCS (Multiple Chemical Sensitivity), June 2008 DX with Food Allergies, wheat, sesame, fresh pineapple . |
|||
![]() |
![]() |
![]() |
#4 | |||
|
||||
Legendary
|
Hi Julie~ I also went and reread your other thread. I guess I kind of agree w/holly on this. It sounds like your Neuro is at a point where he can't DX you, but wants to keep your file open.
As several have said, it may be a good idea to see an MS specialist or at least a diff Neuro. A 2nd opinion may make you feel better. Wish I could help more, but it sounds like your Dr is at a crossroads and can't put his finger on a dx right now. We are here for ya, as know it's frustrating. Hope you feel better soon. take care and don't forget that ~~ we care. ![]()
__________________
DM . |
|||
![]() |
![]() |
"Thanks for this!" says: | momXseven (01-30-2008) |
![]() |
#5 | |||
|
||||
Junior Member
|
I use the va and they wont even call me back.
![]()
__________________
Life is too short to wake up with regrets. So love the people who treat you right. Forget about the one's who don't. Believe everything happens for a reason. If you get a chance, take it. If it changes your life, let it. Nobody said life would be easy; they just promised it would most likely be worth it.' "Drive it like ya stole it" Dx spms 2004 |
|||
![]() |
![]() |
"Thanks for this!" says: | momXseven (01-30-2008) |
![]() |
#6 | ||
|
|||
Senior Member
|
I went and read it too. I agree that he is stumped and I don't think evoked potetials are going to make a difference. What you say about your LP results leads me to think you need a second opinion. At this point, if you have MS, it's not ready to show it's ugly face yet and if a second opinion gets you no where, it may be time to stop until something dramatic happens.
I'm not sure how old you are, but I do know in my early 30's MS was suspected with me but the MRI was clean as a whistle. Now all these years later, I only have two lesions. I consider this good as my brain is not being eaten away. I do know that when I walked away years ago, I went on to have a really good life, free of worry. But my eye problem has NEVER improved. I learned to live with it....not happy about it, but there is no 'cure'....so I had to move on and survive. I, like you, want to know....I want treatment if I need it....but if you can't prove that you have it with your tests, you are not going to be treated for MS. All that said, I don't know what to do about your sx. Cymbalta and some RLS med's may be the answer for now....as well as that second opinion!! ![]()
__________________
. Wisdom to the soul is what health is to the body |
||
![]() |
![]() |
"Thanks for this!" says: | momXseven (01-30-2008) |
![]() |
#7 | |||
|
||||
Senior Member
|
Quote:
When I 1st had these problems come up about 4 years ago I saw a Dr and had an MRI and blood work she didn't see anything wrong but treated me with pain meds, muscle relaxers, Lyrica & Cymblata. This went on for 2 years until we moved. So I winged off the meds to see how I would do, after all I gained about 60 pounds from the meds and wasn't feeling well most of the time. I continued to have SX the whole time, on meds or off but didn't worry about seeing a Dr until last month when 1/2 my body went numb and went to the ER where they told me I had to see a neuro because something wasn't right. I feel like I just need to go back into hiding and try telling my self nothing is wrong with me until 1/2 my body goes numb again.
__________________
Hi, I'm Julie and mommy to 7 little kids (ages 4 to 11). . DX with Fibromyalgia, 1998 DX with MCS (Multiple Chemical Sensitivity), June 2008 DX with Food Allergies, wheat, sesame, fresh pineapple . |
|||
![]() |
![]() |
![]() |
#8 | ||
|
|||
Senior Member
|
Quote:
![]() So, I'm going to say something positive....I think ![]() If we do have MS, and it refuses to show itself to doctors...then we have such a mild form of it, we should be celebrating ![]() ![]() ![]() ![]() ![]() ![]() This would mean that it is moving so slowly, and it is so light, that we may never get a dx, and may get by in life just fine without any meds. I was numb too for two months....thats a long time...most of my tests (not the LP) were done during this flair, but it's still refusing to show itself. I suppose the worst thing about all this, is family and friends shaking their heads, saying 'see, I told you what you are feeling is normal' (bla bla bla!) If it's normal to be numb for months, to have vertigo for months, for visual symptoms to interphere with life, for short term memory to be challanged, and in your case, shaking, etc....then I want off this ride ![]() ![]() Hang in there!
__________________
. Wisdom to the soul is what health is to the body |
||
![]() |
![]() |
"Thanks for this!" says: | momXseven (01-30-2008) |
![]() |
#9 | |||
|
||||
Member
|
I agree with what has been posted here already. He is doing the best job he can and admitted he was stumped since you tests all come back negative and clear.
With that said, there is not much wiggle room in further treatment. Sounds like he is willing to wait and watch with you and try and treat some of your most pressing symptoms. As we all know, depression is a sickness with physical side effects and it is also a symptom of MS. Maybe you need to investigate other potential causes for your symptoms. WebMD is a good place to start. I know this is very frustrating for you and for many it is years before they get the evidence to show up in tests and match to their symptoms. All you can do is keep researching, roll with the punches, and take things one day at a time.
__________________
Craig Mattice "Live Like You Mean It!" . Dx'd 12/00 w/RRMS Dx'd 05/01 w/SPMS 03/05 Rescinded MS Dx Neuro thinks something else 03/06 New Dx of Hereditary Spastic Paraplegia (HSP) Rare deteriorating motor neuron disease. No cure. No Treatments. Only 20,000 Dx'd patients in US |
|||
![]() |
![]() |
"Thanks for this!" says: | momXseven (01-30-2008) |
Reply |
Thread Tools | |
Display Modes | |
|
|
![]() |
||||
Thread | Forum | |||
Neuro competency or not? | General Health Conditions & Rare Disorders | |||
neuro wants to see me! | Multiple Sclerosis | |||
World-Class Neuro Center Opens: Georgia Neuro Center | Parkinson's Disease | |||
Hello everyone, went to new Neuro today! | Multiple Sclerosis | |||
HELP what should i ask my neuro | ALS |