Jenny3838 and Ollieopps~ the neuro listened to me about PKD!

[jillmb]

I had my neuro appt. today, and all the results from my tests were negative. I printed out 4 articles about PKD to show him. He said that he did hear of this before, but was not too familiar with it, he skimmed the articles, which I had highlighted various parts, told him about you two, and asked what he thought.

I told him how you were given Tegretol and the symptoms went away, and what did he think about that? He said that if I felt that I wanted to try the tegretol he would prescribe it for me and see how it works. I was so shocked that he asked me what I thought and if I wanted to try it he'd have no problem giving it to me. He said that it wouldn't have any effects on me if I took it and it didn't do anything and that it was worth a try. Of course I said yes, that I would try it. He gave me a low dose to start, 100mg twice a day for one week, then 3 times a day the week after.

I took the first pill tonight after dinner, and I am praying that it will work! I feel like it is worth a shot and if I don't try it I will never know. Oh, and he even told me about a neuro-specialist in these disorders, who is at Jefferson Medical Center in Philadelphia. He said it would take months to get an appt. with him on my own, but if I want to go see him, he will get me an appointment. So, I will see how this medicine works and then go from there....

Thanks for telling me your experiences regarding this and leading me in this direction. I just hope and pray that it works for me like it did for you!

Keeping my fingers crossed~
Jill

[Jenny3838]

Hi Jill,
I have been thinking about you all weekend and today!!
I am not surprised that he has never seen it. Most neuros have not since there have only been around 150 documented cases!! I am so happy that he gave you the Tegretol. Tomorrow I am going to try and find my doctors note from 11 years ago to see if the exact dosage of Tegretol is listed.

Jill how are you doing otherwise? Last week you said that your symptoms were getting better. Are they still getting better? I think you should see the specialist at Jefferson. I am so glad you posted!!

I had my neuro appt. today, and all the results from my tests were negative. I printed out 4 articles about PKD to show him. He said that he did hear of this before, but was not too familiar with it, he skimmed the articles, which I had highlighted various parts, told him about you two, and asked what he thought.

I told him how you were given Tegretol and the symptoms went away, and what did he think about that? He said that if I felt that I wanted to try the tegretol he would prescribe it for me and see how it works. I was so shocked that he asked me what I thought and if I wanted to try it he'd have no problem giving it to me. He said that it wouldn't have any effects on me if I took it and it didn't do anything and that it was worth a try. Of course I said yes, that I would try it. He gave me a low dose to start, 100mg twice a day for one week, then 3 times a day the week after.

I took the first pill tonight after dinner, and I am praying that it will work! I feel like it is worth a shot and if I don't try it I will never know. Oh, and he even told me about a neuro-specialist in these disorders, who is at Jefferson Medical Center in Philadelphia. He said it would take months to get an appt. with him on my own, but if I want to go see him, he will get me an appointment. So, I will see how this medicine works and then go from there....

Thanks for telling me your experiences regarding this and leading me in this direction. I just hope and pray that it works for me like it did for you!

Keeping my fingers crossed~
Jill

[ollieopps]

My dosage was 100mg 2 x a day. They told me it was important to not stop the dosage cold turkey, so when I stopped taking it I went to one pill a day then 1/2 a day. It's a very low dose, I think my doc called it a pediatric dose, but for the most part it stopped symptoms.

Good Luck - hope it helps.

PKD?

Curious to know about PKD.

All I found was polycystic kidney disease.

Is there somethine else with that acronym?

Thanks

[jillmb]

Jenny and Ollieopps

Jenny and Ollieopps~

I took the first pill last night, and I definitely see improvement today!!! It didn't completely go away, but it is better. I took the second pill this morning so I hope to see more improvement today. It is a low dose, 100 mg. twice a day, it's a chewable tablet which doesn't really taste too good, but if it helps, I don't care what it tastes like!

Thanks again, I'm hoping and praying that this is going to work

Jill

[jillmb]

Wobbler

Hi Wobbler,

I know, I came across that too during my searches! It stands for "Paroxysmal Kinesigenic Dystonia".

Jill

[ollieopps]

for Wobbler

This was mentioned in the other message thread, and I'm assuming this is PKD:

Thank you for mentioning the Paroxysmal Dystonia; I never heard of it before and of course I had to look it up! I did find some info that really pertains to me and I printed it out. I am going to mention this to my neuro next week and see what he says about it.

I was not diagnosed with Paroxysmal Dystonia - according to the MS doc my symptoms coincide with the location of the largest lesions. He said he could predict the location on my active lesion based on my description of symptoms. I've had symptoms since January - wish they would go away. I don't take medication for the symptoms at this point since the medication seemed to cause more cog fog than I felt comfortable with. I deal with the symptoms best I can, some days are much better than other days - and I hope for those days.

[RoyaleMSer]

Me too!

I'm also wondering what PKD is....

Do tell!

[jillmb]

Raegan,
It's hard to describe, and honestly I don't even know if it's what I have, but it's very similar to what I've been going through. I have not been diagnosed with it by my doctor, I'm just going by what Jenny3838 showed me. And after showing the articles to my doctor, he agreed to give me the meds for it!

Do a google search on it, or go to the website:
http://www.dystonia-foundation.org/p...re_info/68.php. It has a connection to MS, that's what's interesting about it and what makes me feel that it might be what I have.

Thanks, Jill

[jillmb]

Ollieopps

Ollieopps,

I was definitely not dx with PKD either; my doctor said he has heard of it but is not familiar with it at all! I think I just "self diagnosed" myself based on you and Jenny3838, and what I read online about it!

It is very similar to what I have been going through and also with the connection to MS, it really seemed like what I have or at least something similar. I showed my doctor 4 articles I had printed, and also highlighted many parts that pertain to my sx. He read or rather skimmed through the articles, and then asked me if I wanted to try the Tegretol and see what happens.

So, I am definitely thinking that he and I have no idea what is wrong with me since all tests have come back negative! This is worth a shot since I have nothing else to go by right now, and thank God, the medicine is working!!!
My sx have greatly diminished in less than 2 days, so I am so thankful for you guys sharing your experiences with me.

Jill

[Jenny3838]

Hi Jill, I am still looking for the 11 year old doctors note. But I say that if your symptoms have greatly dimished then that is all that matters. I was having horrible symptoms and after one dose they completely went away, so it was so dramatic for me!! I think at some level we are lucky to have a pill that cured a horrible symptom!!

Ollieopps,

I was definitely not dx with PKD either; my doctor said he has heard of it but is not familiar with it at all! I think I just "self diagnosed" myself based on you and Jenny3838, and what I read online about it!

It is very similar to what I have been going through and also with the connection to MS, it really seemed like what I have or at least something similar. I showed my doctor 4 articles I had printed, and also highlighted many parts that pertain to my sx. He read or rather skimmed through the articles, and then asked me if I wanted to try the Tegretol and see what happens.

So, I am definitely thinking that he and I have no idea what is wrong with me since all tests have come back negative! This is worth a shot since I have nothing else to go by right now, and thank God, the medicine is working!!!
My sx have greatly diminished in less than 2 days, so I am so thankful for you guys sharing your experiences with me.

Jill

[ollieopps]

My Doc said one dose of the Tegretol and symptoms would go away - even a pediatric dose! I was surprised, it indeed took away that symptom. What it did for me was give me a bad case of brain fog - so I went off it after a month. I gave myself, brain, a respit from the symptom - and now the symptoms are much less, or changed. I will deal with the symptoms as long as I can. Knowing I can have a respite if I need or want it is a good thing. It sounds like a very good fit for you, for that I'm thankful!

[jillmb]

Jenny and Ollieoops~

I know, this is truly amazing how this one pill can make you feel so much better. You guys had better luck than I did, I mean my symptoms cleared up immensely, but did not disappear after the first dose!

It's been 3 days and I can tell when the meds start to wear off, like at night when it's time to take my 7:30 pill, I can feel a little bit of the symptoms start again. And in the morning, I am up and getting ready for the day, and it can be about 2 hours before I eat breakfast and take the morning pill. I can feel a tiny bit of the symptoms then as well.

Next week I will start to take another pill in the afternoon so hopefully that will help! But, other than that I am so thankful, it's been a miracle that I found you guys!

Thanks, Jill