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Joined: Jul 30, 2009 Posts: 862 Location: Slovakia, Europe
Posted: Sat Jul 03, 2010 10:47 am Post subject:
8 months after my procedure.
- I do not feel any problems regarding my stent
- I have not had any relaps
- I do not have any new MS symptoms
- nothing is worse
- I still have problems with heat
- I think I have the same problems with my vision as before the treatment
- I still have headache but not that often and not that strong
- still use one cane
- I took only 150 mg of Carbamazepin last night at 10 pm - it is almost 7 pm and so far no pain (I used to take 1200 mg a day)
- I still take LDN
- I must take more vitamin D because it is still not high enough
- I still have my limits, I need break often, I still feel my MS
- when I do not overdo it I do not feel the MS fatigue
My secret plan is to be able to work at least 4 hours a day. I am still not that far
Erika _________________ LUCKY GIRL, Aug. 7, 09 Doppler Ultras. made by Dr. Simka in Poland, left Jugularis valve problem, RRMS since 1996, EDSS 5,5, Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, IBT-for 3 months, never on DMDs
Do you compare yourself on the EDSS scale pre-op and post-op?
What I can see so far is that it seems to be less benefits as longer up on the EDSS-scale one is. At least in the short terme it seems to be so.
Lets hope that in the longterme the brain can recover it self and let fuctions restore.
Joined: Jul 30, 2009 Posts: 862 Location: Slovakia, Europe
Posted: Sun Jul 04, 2010 3:05 am Post subject:
trapatron wrote:
Do you compare yourself on the EDSS scale pre-op and post-op?
What I can see so far is that it seems to be less benefits as longer up on the EDSS-scale one is. At least in the short terme it seems to be so.
Lets hope that in the longterme the brain can recover it self and let fuctions restore.
EDSS - I would say it is 5,0. It was 5,5 before. I think so, because I really can walk faster just not too long and I still need a cane.
EDSS does not say many other things so it is hard to say.
When I have really good day, with no stress, no heat, not doing much, I would even say it is 4,5.
On the other hand after spending 5 hours on a bus in heat without AC, with strong headache and other problems it is 5,5 again.
EDSS is some help but I do not think it is very good test for us with MS.
Erika _________________ LUCKY GIRL, Aug. 7, 09 Doppler Ultras. made by Dr. Simka in Poland, left Jugularis valve problem, RRMS since 1996, EDSS 5,5, Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, IBT-for 3 months, never on DMDs
Thanks Erika.
Asking that because I simply think that just walking is hard to get fast improvment from this treatment. And the reason for that is just simple that this treatment dont resolve allredy damages in brain and spinal.
The hope is if the brain withe restored bloodflow in longterme can repair it selfe. Lets hope so.
Thanks Erika.
Asking that because I simply think that just walking is hard to get fast improvment from this treatment. And the reason for that is just simple that this treatment dont resolve allredy damages in brain and spinal.
The hope is if the brain withe restored bloodflow in longterme can repair it selfe. Lets hope so.
Yes, and Erika sorry you feel a bit down - these are these ups and downs - keep up! Not only hope to repair with more time but most likely prevention of further damage!
For me the same, my hand/feet symptoms do not seem to have improved much and it's worse with heat, as always. However for me CCSVI until now had major impact on reducing fatigue/instability/cloudy brain spells and restoring a normal bladder function. That's already something, to feel more alert and energetic - and hope indeed for the future: prevention.
Joined: Jul 30, 2009 Posts: 862 Location: Slovakia, Europe
Posted: Tue Jul 06, 2010 2:21 am Post subject:
This is a miracle for me: I am on 150 mg of Carbamazepin a day only! I can not believe it. Last night was the 4th night I took only 150. I do not feel any pain. Only sometimes I feel very little stiffness of muscles. I use sezame oil and massage it for 2 minutes.
Just as everybody I am fed up with MS and all the complications around: doctors, social life, money, patients, sitting whole day only in my cold room because it is hot outside, yes I can read some books but do not forget my problems with vision.
On the other hand I really should not complain. I had the chance to visit maybe half of the world, I have 2 University degrees and I HAVE A STENT and I only take 150 mg of Carbamazepin - I never liked the side effects so I am happy of course.
Erika _________________ LUCKY GIRL, Aug. 7, 09 Doppler Ultras. made by Dr. Simka in Poland, left Jugularis valve problem, RRMS since 1996, EDSS 5,5, Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, IBT-for 3 months, never on DMDs
Joined: Jul 30, 2009 Posts: 862 Location: Slovakia, Europe
Posted: Mon Jul 12, 2010 5:12 am Post subject:
Good news with little complications.
I am without Carbamazepin for my nerve pain since July 7.
The little complication is depressions. Carbamazepin contains some antidepressants. I knew it and as you know I was cutting Carbamazepin step by step but... I started my sleeping pills again about 6 weeks ago. I feel depressions during the day as well so I have decided to call psychiatrist for an appointment. She will maybe help me with my high pulse as well. I think I have been suffering from panic attacks but I am not sure.
So I will see the doctor at the end of this month.
It is very hot in my country — often 100 F so I sit at home all the time or in our basement. I feel better in the evening - all the years with MS.
So, it took me 8 months after the procedure not to feel the nerve pain. I spent more than 3 years on Carbamazepin.
Talk to you later
Erika _________________ LUCKY GIRL, Aug. 7, 09 Doppler Ultras. made by Dr. Simka in Poland, left Jugularis valve problem, RRMS since 1996, EDSS 5,5, Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, IBT-for 3 months, never on DMDs
Good news with little complications.
I am without Carbamazepin for my nerve pain since July 7.
The little complication is depressions. Carbamazepin contains some antidepressants. I knew it and as you know I was cutting Carbamazepin step by step but... I started my sleeping pills again about 6 weeks ago. I feel depressions during the day as well so I have decided to call psychiatrist for an appointment. She will maybe help me with my high pulse as well. I think I have been suffering from panic attacks but I am not sure.
So I will see the doctor at the end of this month.
It is very hot in my country — often 100 F so I sit at home all the time or in our basement. I feel better in the evening - all the years with MS.
So, it took me 8 months after the procedure not to feel the nerve pain. I spent more than 3 years on Carbamazepin.
Talk to you later
Erika
Dear Erika, I think to have depressions is normal there and then (even for non-MS people!). For me the best psychiatrists so far have been some amazing real-life friends (best detached from family) and also somehow in certain periods the internet
And if you have now - being just off from a medication that you have been using for such a long time(!) - some depression phases is more than normal. So it's good you recognize it and are seeking help. This alone shows that it will help and I send you courage that you'll soon feel better again!
And so happy for you that the nerve pain gone without med now!! We all admire your energy and strength and you'll also make it to get over this medication-withdrawal - I'm sure! Best wishes Steffi
Joined: Jul 30, 2009 Posts: 862 Location: Slovakia, Europe
Posted: Sun Jul 25, 2010 9:05 am Post subject:
Fatigue is still my problem number 1 (or again, because I really felt better the first 33 days after the procedure). I think I will start with Vigil tomorrow again.
I almost do not feel any fatigue in the evening.
Good thing is that I do not have the nerve pain anymore.
However, I do not know what the future brings.
So, fatigue, heat and physical activity is still big NO, NO.
Talk to you later...
Erika _________________ LUCKY GIRL, Aug. 7, 09 Doppler Ultras. made by Dr. Simka in Poland, left Jugularis valve problem, RRMS since 1996, EDSS 5,5, Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, IBT-for 3 months, never on DMDs
Joined: Nov 26, 2009 Posts: 198 Location: Summerland. BC Canada
Posted: Sun Jul 25, 2010 12:26 pm Post subject:
long time no see erika
great news re nerve pain meds...i think we think too much sometimes...depression that is drug induced is creepy...it will lift and you can be your normal happy self soon, i hope.
i'll be back in katowice aug 24th, for the 2nd time, praying for a stent so i can just get on with my life...thats all i want, to feel good and see improvements...you are an inspiration, thats for sure come this way in your world travels...we'd be thrilled.
diane and ron
Joined: Jul 30, 2009 Posts: 862 Location: Slovakia, Europe
Posted: Mon Jul 26, 2010 1:25 am Post subject:
esta wrote:
long time no see erika
great news re nerve pain meds...i think we think too much sometimes...depression that is drug induced is creepy...it will lift and you can be your normal happy self soon, i hope.
i'll be back in katowice aug 24th, for the 2nd time, praying for a stent so i can just get on with my life...thats all i want, to feel good and see improvements...you are an inspiration, thats for sure come this way in your world travels...we'd be thrilled.
diane and ron
Dear Esta
I have been thinking and comparing. My BP went lower day 34 after my procedure. And really, since that time I do not feel as good as the first 33 days - I am talking about my fatigue and energy. Anyway I will know more when Dr. Simka checks me again. I go to see a psychiatrist in 2 days finally. I hope she gives me some mild antidepressants. To be honest except for MS and CCSVI I really have reason to be depressed. It is the 2 courts. It is so stressful and it takes too much time. Both cases are in reality very simple.
On the other hand I should not complain because you saw me, you know I am able to walk just with one cane, I was able to come by bus by myself...
I wish you all the best for Poland, I wish you they find all the problems and all of them will be treatable. I wish you to have constant relief.
Erika _________________ LUCKY GIRL, Aug. 7, 09 Doppler Ultras. made by Dr. Simka in Poland, left Jugularis valve problem, RRMS since 1996, EDSS 5,5, Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, IBT-for 3 months, never on DMDs
Erika,
I am another fan of yours who has been with you from the beginning.
Your doctor will be able to help with a mild antidepressant.
I am VERY happy that your pain is now gone!! How wonderful for you!!
Not having a relapse in over eight months is fantastic news and brings HAPPY tears to my eyes.
Joined: Jul 30, 2009 Posts: 862 Location: Slovakia, Europe
Posted: Tue Aug 03, 2010 1:51 am Post subject:
9 months after my procedure in Poland
Except one thing I still have the same symptoms as before my procedure.
My nerve pain in my right arm is gone since 8 months after my procedure. My pain started in 2005. I started with 1200 mg of Carbamazepin. Now I do not take any.
My fatigue was better only the first 33 days. My BP went lower (90/60) the day 34. I do not know why.
I do not have any new symptoms, I have not had any attack, Nothing is worse.
I still walk with one cane. I especially do not like my fatigue, dizziness and brain fog.
One short interesting story: I went to see a psychiatrist after many, many years. I wanted to ask her for some very mild antidepressants. She gave me 3 drugs. I felt so much worse. My BP went lower (90/60).
I was very weak, extremely strong headache, fatigue, dizzy a lot, could not fall a sleep anyway. I was almost crying because I felt like crap. I stopped with all the pills and will give it back to her.
I will simply continue with 1/2 of my Zopiclon to be able to sleep. I do not feel OK but much better than with the crazy pills.
It was like when my attack starts. Very scary. I am fine now.
I will do no more experiments. I will wait until Dr. Simka checks my veins in October.
Erika
[/b] _________________ LUCKY GIRL, Aug. 7, 09 Doppler Ultras. made by Dr. Simka in Poland, left Jugularis valve problem, RRMS since 1996, EDSS 5,5, Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, IBT-for 3 months, never on DMDs
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and I only take 150 mg of Carbamazepin - I never liked the side effects so I am happy of course. 
