I'm so happy I could cry! LOL**They upped my appointment! WHOO-HOO!**

[phorsenuf]

A few weeks ago I posted about some problems I was having and how the last Dr.(a neuro) poo-poo'ed me and my symptons saying it was all my thyroid. I heard from my Drs. office today and they are sending me to a neuro that specializes in MS.
Now, I know this probably seems like a demented thing to be happy about but finally, someone is listening to me and hopefully I will finally get some answers! I feel like I am going downhill fast.
The crappy part though is the appointment isn't until June but I'm going to be asked to be put on a cancellation list. Hopefully I'll get in sooner, but if not oh well, at least I'm getting somewhere!!

 

[poohandwendy]

That is good news, that you are getting closer to a dx. I hope they find it to be something easily controlled by medication or something...prayers and good vibes coming your way!

 

[In a hurry]

I am so happy that you are looking at getting some answers!

 

[disneynutt1225]

I was wondering how everything was going. Hopefully you'll be able to see the doc before June, but if not, it's comforting knowing you at least have an appointment. Keep us updated! Good luck!

 

[olena]

I totally understand your joy....

 

[mickeyboat]

A few weeks ago I posted about some problems I was having and how the last Dr.(a neuro) poo-poo'ed me and my symptons saying it was all my thyroid. I heard from my Drs. office today and they are sending me to a neuro that specializes in MS.
Now, I know this probably seems like a demented thing to be happy about but finally, someone is listening to me and hopefully I will finally get some answers! I feel like I am going downhill fast.
The crappy part though is the appointment isn't until June but I'm going to be asked to be put on a cancellation list. Hopefully I'll get in sooner, but if not oh well, at least I'm getting somewhere!!

Thank goodness! I am so glad to hear that. A friend of mine was dx about years ago with MS, and it literally took forever to figure out what was going on.

Are they sending you to DHMC? Maybe we can have lunch!

Denae

 

[phorsenuf]

Thank goodness! I am so glad to hear that. A friend of mine was dx about years ago with MS, and it literally took forever to figure out what was going on.

Are they sending you to DHMC? Maybe we can have lunch!

Denae

I'm going to Upper Valley Neurological Neurosurgery in Lebanon.
Are you near there? Lunch would be fun!

 

[FreshTressa]

Good luck getting it all figured out, and hopefully the correct treatment!

 

[Tinijocaro]

DH had symptoms for years that doctors couldn't figure out-he'd been to MS and MD clinics, had biopsies done and had been to neurologists. One day, while pulling a carton of milk out of the fridge, I happened to read the side of the carton that said "National Dystonia Week". They went on to describe the symptoms of the various types of dystonia. The one type fit dh's symptoms perfectly. He went online, made an appointment with a new neurologist and was diagnosed with a type of dystonia. Got meds, and the symptoms are gone.

Dystonia is a type of movement disorder that presents itself in various ways. Not sure what your symptoms are, but keep looking, asking and scouring the net- your bound to find out what it is. It was such a fluke that i found out dh's problem by reading a milk carton! Don't give up!

Jackie

 

[Trish Bessette]

Glad to hear you got a doctor appt! I wish the very best for you!

 

[Rajah]

Totally understand and I'm very glad to hear it! I hope they can get to the bottom of things for you!

 

[cats mom]

I'm glad to hear that you got your referral.

I'm sending pixie dust that you get a knowledgeable, personable neuro.
(wait, I think that's an oxymoron...)
Sorry, my bad.

Really, I hope the new neuro will listen to you and pay attention to your history and your concerns and that you get some answers.

As much as I would rather DD did not have that darn MS dx, at least we know what is wrong and can educate ourselves in an attempt to help her make the best decisions possible to manage her disease.

I can only imagine how frustrating it must be for you to be in limbo when you know something is not right.
Good luck and keep us posted.

 

[phorsenuf]

I'm glad to hear that you got your referral.

I'm sending pixie dust that you get a knowledgeable, personable neuro.
(wait, I think that's an oxymoron...)
Sorry, my bad.

Really, I hope the new neuro will listen to you and pay attention to your history and your concerns and that you get some answers.

As much as I would rather DD did not have that darn MS dx, at least we know what is wrong and can educate ourselves in an attempt to help her make the best decisions possible to manage her disease.

I can only imagine how frustrating it must be for you to be in limbo when you know something is not right.
Good luck and keep us posted.

The initial visit is 90 minutes long. They must be very thorough! LOL
I picked up my CD of my last 2 MRI's. Pretty cool looking. Even though my appointment isn't until June I figured I'd get them now so I could be ready if they call me with a next day cancellation or something.

 

[mickeyboat]

I'm going to Upper Valley Neurological Neurosurgery in Lebanon.
Are you near there? Lunch would be fun!

Cathy - I work in Lebanon, about a mile from that place. I can give you directions if you need them. I am going to be out of town the tail end of June for a long weekend, so as long as it isn't then, it's a date. PM me.

Denae

 

[Dan Murphy]

Good wishes, 4's.

 

[disneymom3]

I totally understand. Just to share info though, I was actually diagnosed with MS almost 4 years ago. As it turns out, it was all my thyroid and I don't have it. (Never developed any lesions.) They still haven't quite fixed the whole thyroid issue but it's a lot better. I can now feel the bottoms of my feet for the first time in four years!

Good luck! I hope you get some answers. Just knowing always makes you feel more in control.

 

[phorsenuf]

I totally understand. Just to share info though, I was actually diagnosed with MS almost 4 years ago. As it turns out, it was all my thyroid and I don't have it. (Never developed any lesions.) They still haven't quite fixed the whole thyroid issue but it's a lot better. I can now feel the bottoms of my feet for the first time in four years!

Good luck! I hope you get some answers. Just knowing always makes you feel more in control.

I know what you're saying about thyroid, but I've been dealing with thyroid issues for almost 30 years now so I'm not convinced. What was wrong with the thyroid that it fell back to that? Also, did you know that you can have MS without ever getting lesions? How were you diagnosed? Was it based solely on symptoms or did they do other testing like a spinal tap or evoked potentials? I don't mean to be nosey, just curious is all.

(See, I'm learning! LOL)

 

[disneymom3]

Don't mind the nosiness. I did every single test in the world I think. I also had one of the top three neuros in MN for MS treatment. None of the tests came back positive except there was a minor indication in the spinal fluid that "could" be interpreted that way.

Wasn't trying to say yours was just thyroid at all, just that I was very surprised that so many of my symptoms disappeared as we got my thyroid adjusted.

Honestly, there are some days I still wonder about the MS.

Again, good luck and I hope you find some definite answers. One of my sisters was recently telling me about a new MS medication that is oral. Whoa would that be an improvement over the injectibles!

 

[phorsenuf]

The neuros office just called and they moved up my appointment! I go in 2 weeks now instead of 2 months!
Plus, They are going to see me in their local office here so I don't have to drive an hour.
That's so cool. She said that since they are aggresive in treating MS they want to get me started with tests right away so if it is that I can get treatment sooner.
I love Drs. like this! LOL

Mickyboat-sorry we're not going to be able to do lunch. I was looking forward to that

Disneymom3- I hope you didn't mistake the tone of my post to you. After I read it back I thought to myself I seem kinda witchy.
When I talked with the nurse that just called she even thought it was a little odd he chalked it up to my thyroid and didn't even schedule an EMG for another 2 months.
I agree too an oral med would be awesome!

 

[In a hurry]

Too totally great! After such a hellacious start this morning, I am thrilled to hear yet another bit of good news for you!