a test of strength

Replies to This Discussion

Permalink Reply by Katie on September 19, 2010 at 3:56pm

Oh Ally - you have been thru so much! I just hope and pray that you will be able to find someone that can help you. I have 3 weeks of pregnancy left to go and the last ultrasound they did showed that the leg and arm legs are 3 weeks behind the rest of the body....I'm scared. Not sure why - it could be from the gabapentin and valium I've been on, but I absolutely can't tolerate the pain without it. I am scared I caused this. Only time will tell what to make of this and I can only pray for a healthy baby. And then I pray I can make my next move - but I have no idea what to do. I don't want to live in a medicine coma. When I was on Topamax, my legs and arms tingled and fell asleep all the time and I had a hard time standing up after I had been laying or sitting for awhile. That all went away after I got off of it. And you know what - it's okay to cry! Sometimes we have to.

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Permalink Reply by Bob Snodgrass on September 19, 2010 at 8:36pm

Hi Ally,
It is a test of strength, especially when your doctor says he doesn't know! I never took depakote, I did have a toxic cocktail that made me wish I wore a name tag; not for others, for me.
Please vent, I mean VENT!
We are here for you.
Thank you for your post. Take good care, bob

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Permalink Reply by Pat Gascoigne on September 20, 2010 at 7:14am

Ally, were you OK on a lower dose? Is there a good reason that you have to come off it completely? I think that one of the worst things about TN is that there are so many setbacks. It's such a difficult road to travel. Hang on in there and have a big hug.

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Permalink Reply by Ally Castellano on September 20, 2010 at 7:40am

thanks everyone. I just needed to vent to someone who I didnt have to explain to.

Katie- I will keep you in my prayers. you are in such a difficult position right now! you have so much on your plate did the dr give any reason why arms are behind in growth? have you talked to any other drs about further treatment?

Bob, Sabrina, pat,
At the lower level of depakote I felt no change in the level of pain, s I needed to icrease. I hope that he will be able to come up with something else because I don't want someone to give up, again!

thank you everyone. I will need to vent later more, I am sure.

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Permalink Reply by Katie on September 20, 2010 at 12:21pm

Hey Ally -
My doctor told me that he 'HAS' seen this before and is not concerned. He just thinks the baby might be a little smaller. I guess all I can do is wait and see.

Did you get any more answers or ideas on how to control your pain? I am meeting with a dr. next week to discuss the possiblities of nerve blocks so we'll see where that goes. I will keep you posted.

It is always okay to vent, Ally! And if you need to vent on the phone, you can call me. I loved our chat last time!

Ally Castellano said:

thanks everyone. I just needed to vent to someone who I didnt have to explain to.

Katie- I will keep you in my prayers. you are in such a difficult position right now! you have so much on your plate did the dr give any reason why arms are behind in growth? have you talked to any other drs about further treatment?

Bob, Sabrina, pat,
At the lower level of depakote I felt no change in the level of pain, s I needed to icrease. I hope that he will be able to come up with something else because I don't want someone to give up, again!

thank you everyone. I will need to vent later more, I am sure.

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Permalink Reply by Ally Castellano on September 20, 2010 at 4:47pm

I had an absolute breakdown earlier today. Between the pain and meds I learned nothing in class today. I got out of class and just started crying. I had emailed Dr. Casey over the weekend and he suggested I go take a visit to Dr. Janetta (the Dr. who invented the MVD) to see what he had to say. I don't know what to do, but I do know that my life can't stay like this. this is not who I am. I have more to do in my life then let TN beat me.

Katie,
Can you do anything as a precaution? Like can you eat more or take supplements? Are you going to have to have a C-section? I thought of you earlier today..as I was getting so upset that I had to do schoolwork and the pain was in the way..Katie deals with pain, 3 kids, pregnancy and owning a buisness..YIKES! Hello, super mom! I hope your kids realize how lucky they!



Katie said:

Hey Ally -
My doctor told me that he 'HAS' seen this before and is not concerned. He just thinks the baby might be a little smaller. I guess all I can do is wait and see.

Did you get any more answers or ideas on how to control your pain? I am meeting with a dr. next week to discuss the possiblities of nerve blocks so we'll see where that goes. I will keep you posted.

It is always okay to vent, Ally! And if you need to vent on the phone, you can call me. I loved our chat last time!

Ally Castellano said:

thanks everyone. I just needed to vent to someone who I didnt have to explain to.

Katie- I will keep you in my prayers. you are in such a difficult position right now! you have so much on your plate did the dr give any reason why arms are behind in growth? have you talked to any other drs about further treatment?

Bob, Sabrina, pat,
At the lower level of depakote I felt no change in the level of pain, s I needed to icrease. I hope that he will be able to come up with something else because I don't want someone to give up, again!

thank you everyone. I will need to vent later more, I am sure.

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Permalink Reply by Katie on September 20, 2010 at 5:24pm

Ally -
I am by far not super mom. There really isn't anything I can do at this point and my doctor has delivered babies for 30 years so I feel some assurance by him telling me that he thinks everything is going to be okay. The best option would have been to not be on any medications, I'm sure. But I couldn't do it! And I finally did something for me and hired a girl to come to my house twice a week and help me out with kids, cleaning, ect. At least until I figure out how to handle it all.

School is hard enough without the pain. So I really hope that Dr. Janetta can help you. It's so discouraging when drs and people give up on us. You have much more experience with it than I do as you have lived with this for so long. I have only had it a year and already I think 'poor me'. Can you take any of your classes online? I can't imagine the stress of class, the commotion, and dealing with roommates right now. Good Luck and let us all know if you find some relief! I gotta you on my mind!

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Permalink Reply by Ally Castellano on September 20, 2010 at 8:00pm

Yes, you are super mom material! One day your kids will have an "a hah" moment, and be like wow my mom is awesome. That is good that you are comfortable with your dr and if he has seen it before, then he can deal with it when it is time. Obviously, the best option is no meds for you now, but is that realistic? Not so much, so don't feel guilt or anything like that. That is good that you have someone to come in and help you! Did you educate her about TN?

I guess I technically could take some of my classes online, but my major (education) is very classroom oriented. I am going to give it some time and I wonder if for my last year I should live at home and commute? It is about an hour drive, so it is possible.

Katie, has your pain changed at all with the changing on the seasons/weather? In NJ it is hot one day and then cold the next. I can feel myself getting congested. : ( does your pain get worse with a cold?

I am done going on a rant. Hope you had an ok day.

Katie said:

Ally -
I am by far not super mom. There really isn't anything I can do at this point and my doctor has delivered babies for 30 years so I feel some assurance by him telling me that he thinks everything is going to be okay. The best option would have been to not be on any medications, I'm sure. But I couldn't do it! And I finally did something for me and hired a girl to come to my house twice a week and help me out with kids, cleaning, ect. At least until I figure out how to handle it all.

School is hard enough without the pain. So I really hope that Dr. Janetta can help you. It's so discouraging when drs and people give up on us. You have much more experience with it than I do as you have lived with this for so long. I have only had it a year and already I think 'poor me'. Can you take any of your classes online? I can't imagine the stress of class, the commotion, and dealing with roommates right now. Good Luck and let us all know if you find some relief! I gotta you on my mind!

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Permalink Reply by Katie on September 21, 2010 at 3:30pm

Thanks Ally - you always make me smile. I will say that the heat bothers me and the cold makes my face go numb so I prefer the winter. The summer heat has really gotten to me this year and made the pain much worse. Last year I spent alot of time outside in the 30 and below weather just to keep my face numb. If I could wrap my face in ice all day I would feel much bettter. Crazy, but I prefer the numbness to the pain.

Hang in there, Ally! You have the personality to endure. I just hope you find someone else that can give you insight and hope because without hope, what do we have?

Ally Castellano said:

Yes, you are super mom material! One day your kids will have an "a hah" moment, and be like wow my mom is awesome. That is good that you are comfortable with your dr and if he has seen it before, then he can deal with it when it is time. Obviously, the best option is no meds for you now, but is that realistic? Not so much, so don't feel guilt or anything like that. That is good that you have someone to come in and help you! Did you educate her about TN?

I guess I technically could take some of my classes online, but my major (education) is very classroom oriented. I am going to give it some time and I wonder if for my last year I should live at home and commute? It is about an hour drive, so it is possible.

Katie, has your pain changed at all with the changing on the seasons/weather? In NJ it is hot one day and then cold the next. I can feel myself getting congested. : ( does your pain get worse with a cold?

I am done going on a rant. Hope you had an ok day.

Katie said:

Ally -
I am by far not super mom. There really isn't anything I can do at this point and my doctor has delivered babies for 30 years so I feel some assurance by him telling me that he thinks everything is going to be okay. The best option would have been to not be on any medications, I'm sure. But I couldn't do it! And I finally did something for me and hired a girl to come to my house twice a week and help me out with kids, cleaning, ect. At least until I figure out how to handle it all.

School is hard enough without the pain. So I really hope that Dr. Janetta can help you. It's so discouraging when drs and people give up on us. You have much more experience with it than I do as you have lived with this for so long. I have only had it a year and already I think 'poor me'. Can you take any of your classes online? I can't imagine the stress of class, the commotion, and dealing with roommates right now. Good Luck and let us all know if you find some relief! I gotta you on my mind!

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Permalink Reply by Ally Castellano on September 22, 2010 at 1:08pm

Katie,
I would do the same thing if I could get my face to go numb. I have never heard of that before, normally cold triggers pain. TN has a COMPLETE mind of it's own and tends to make us think we are crazy. Ths probably wouldn't help, but could you get some of the muscle gels that are cold? Obviously not icy hot if heat makes your pain worse. Bio-freeze is a natural gel and it cools and relaxes? I use it on my shoulders because when they tense up pain does too!

I really hope that you are able to get support from your family and that the baby comes soon. Happy and HEALTHY!!

Jackie,
Healthcare is great here. We have so many new ways to treat things, just not TN. I am also a complicated case. A few hours after my breakdown I had a good cry like you had suggested, and it helped : ) I hope that you are having a good day with pain.

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Permalink Reply by Katie on September 22, 2010 at 1:19pm

Actually, icy hot does make the pain better....it seems to numb some of the pain or whatever it does...I have been to 4 neurologists now (and about 10 other doctors) and all think I have something different...so who knows, but last one I saw thought I had damage to the trigeminal nerve which is causing all of my pain. I don't think I am a typical case by any means so we are in the same boat there. Glad you got a good cry in. Sometimes we need to do that!

Ally Castellano said:

Katie,
I would do the same thing if I could get my face to go numb. I have never heard of that before, normally cold triggers pain. TN has a COMPLETE mind of it's own and tends to make us think we are crazy. Ths probably wouldn't help, but could you get some of the muscle gels that are cold? Obviously not icy hot if heat makes your pain worse. Bio-freeze is a natural gel and it cools and relaxes? I use it on my shoulders because when they tense up pain does too!

I really hope that you are able to get support from your family and that the baby comes soon. Happy and HEALTHY!!

Jackie,
Healthcare is great here. We have so many new ways to treat things, just not TN. I am also a complicated case. A few hours after my breakdown I had a good cry like you had suggested, and it helped : ) I hope that you are having a good day with pain.

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Permalink Reply by Ally Castellano on September 22, 2010 at 8:28pm

Can you ask the Drs that you visited to speak to one another? Maybe they could collaborate and come up with something? That is awesome that the icy-hot works! Do you have long cold winters? I hope you do! AHH so now I feel like Drs think I am crazy..the recommened the psychometric test and I posted it on here for responses and people responded...Blahh. I promise I am not crazy!

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