Gibbledygook's stents

Tell us what you are using to treat your MS-- and how you are doing.

Re: Gibbledygook's stents

Postby gibbledygook » Thu Jan 05, 2012 5:48 am

Reasons for caution on getting pregnant:

Abstract
Ovarian hyperstimulation syndrome is the most serious iatrogenic complication resulting from ovarian stimulation. Currently there is no clear evidence of absolute efficacy for most of standard preventive and curative methods. Recent studies indicate that human chorionic gonadotropin increases vascular endothelial growth factor, vascular endothelial cadherin and vascular permeability via endothelial adherence junctions. Vascular endothelial growth factor plays a pivotal role in the pathophysiology of the condition and therefore vascular endothelial factor antagonism has been suggested for the prevention of the syndrome. Since vascular endothelial growth factor is also a physiological regulator of folliculogenesis, progesterone secretion and endometrial angiogenesis, its complete inactivation by specific blockers could produce undesirable effects interfering with early pregnancy development and therefore they cannot be used clinically. Recently, low doses of dopamine agonists (cabergoline) have been shown to counteract vascular endothelial growth factor induced vascular hyperpermeability, reducing the incidence of the syndrome by prophylactic treatment without compromising pregnancy outcome. The absence of undesirable side effects could make cabergoline an effective and safe etiologic approach for the prevention and treatment of the syndrome. A novel approach has suggested that metformin may also be helpful in the syndrome prevention in women with or without polycystic ovary disease.

http://www.ncbi.nlm.nih.gov/pubmed/21830453

Could this be why I have suffered bad relapses on conception? Is it the big diminution of this hormone during the 3rd trimester as well as the lower immune response that explaines the lower rate of relapses in the 3rd trimester?

Unfortunately I think it most unlikely that pregnancy is of any benefit to women with MS.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Re: Gibbledygook's stents

Postby gibbledygook » Fri Jan 06, 2012 5:29 am

Hi L, wo, your story is hard core. I truly hope that those clots can be sorted out. Do you take fibrinolytics and things like bromelain? I think Prof Sclafani has dealt with clots before, have you contacted him?

It sounds like the HCG may have caused you such permeability that the clotting also will have increased. Jeez. And then the immune system will have gone crazy. And there I was complaining about my relatively low level of "normal pregnancy HCG"! Still I think it's important for anyone contemplating pregnancy with or without IVF to know that researchers blame HCG for vascular permeability. And all pregnancies start with elevated HCG. This is the hormone which those urine tests for pregnancy measure. This hormone rises until the 3rd trimester. I find it interesting that both of my pregnancies have started with an immediate deterioration/relapse on conception. I think HCG is likely contributing! It's just speculative of course. But clearly HCG causes vascular permeability. It rises in early pregnancy and abates in the 3rd term. Maybe the immune system isn't the be all and end all! But those neurologists will only bark up one tree...
Incidentally I was looking through recent papers on autologous stem cell transplants and the majority of people continue to progress. Very depressing. Particularly after such a hard core operation.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Re: Gibbledygook's stents

Postby gibbledygook » Fri Jan 06, 2012 6:59 am

From Pub Med:
Neurol Sci. 2011 Dec 8. [Epub ahead of print]
Long-term efficacy of autologous haematopoietic stem cell transplantation in multiple sclerosis at a single institution in China.
Chen B, Zhou M, Ouyang J, Zhou R, Xu J, Zhang Q, Yang Y, Xu Y, Shao X, Meng L, Wang J, Xu Y, Ni X, Zhang X.
Source
Department of Hematology, The Affiliated Drum Tower Hospital of Nanjing University Medical School, 321 Zhongshan Road, Nanjing, 210008, People's Republic of China.
Abstract
Autologous haematopoietic stem cell transplantation (AHSCT) is a promising treatment for multiple sclerosis (MS) patients who have not adequately responded to conventional therapies. We retrospectively evaluated the safety and long-term clinical outcome of AHSCT in MS patients in China. Twenty-five patients with various types of MS were treated with AHSCT. Peripheral blood stem cells were derived by leukapheresis after mobilized with granulocyte colony-stimulating factor. Then CD34+ cell selection of the graft was performed and anti-thymocyte globulin was given for T-cell depletion, with the conditioning regimen BEAM adopted and early and late toxicities recorded. Long-term responses were evaluated by the expanded disability status scale (EDSS), progression-free survival and gadolinium-enhanced magnetic resonance imaging scans. 10, 7 and 8 patients experienced neurological improvement, stabilization and progression, respectively. The median EDSS scores observed over 1-year follow-up after transplantation (5.5-7.0) were consistently lower than the baseline (8.0). The progression-free survival rate was 74, 65 and 48% at 3, 6 and 9 years post-transplant. 58% cases (7/12) had active lesions at baseline and all turned to inactive status in the years of follow-up. 25% cases (3/12) experienced progression after transplantation but had no active lesions in MRI over the whole follow-up period. 17% cases (2/12) without active lesions at baseline progressed active lesions in MRI. The major early toxicity resulted in fever and late toxicity caused transplantation-related mortality due to severe pneumonia and varicella-zoster virus hepatitis, respectively. AHSCT is a feasible treatment for severe MS and its long-term efficacy is favorable.
PMID: 22160751 [PubMed - as supplied by publisher]

http://www.ncbi.nlm.nih.gov/pubmed/22160751



Hematology Am Soc Hematol Educ Program. 2011;2011:280-4.
Successes and failures of stem cell transplantation in autoimmune diseases.
Tyndall A.
Source
1University of Basel, Basel, Switzerland.
Abstract
Over the past 15 years, more than 1500 patients have received HSCT, mostly autologous, as treatment for a severe autoimmune disease (AD). More than 1000 of these have been registered in the European Group for Bone Marrow Transplantation (EBMT) and European League Against Rheumatism (EULAR) combined database. A recent retrospective analysis of 900 patients showed that the majority had multiple sclerosis (MS; n = 345) followed by systemic sclerosis (SSc; n = 175), systemic lupus erythematosus (SLE; n = 85), rheumatoid arthritis (RA; n = 89), juvenile idiopathic arthritis (JIA; n = 65), and idiopathic cytopenic purpura (ITP; n = 37). An overall 85% 5-year survival and 43% progression-free survival was seen, with 100-day transplantation-related mortality (TRM) ranging between 1% (RA) and 11% (SLE and JIA). Approximately 30% of patients in all disease subgroups had a complete response, often durable despite full immune reconstitution. In many patients, such as in those with SSc, morphological improvement such as reduction of skin collagen and normalization of microvasculature was documented beyond any predicted known effects of intense immunosuppression alone. The high TRM was in part related to conditioning intensity, comorbidity, and age, but until the results of the 3 prospective randomized trials are known, an evidence-based modification of the conditioning regimen will not be possible.(1) In recent years, multipotent mesenchymal stromal cells (MSCs) have been tested in various AD, exploiting their immune-modulating properties and apparent low acute toxicity. Despite encouraging small phase 1/2 studies, no positive data from randomized, prospective studies are as yet available in the peer-reviewed literature.
PMID: 22160046 [PubMed - in process]

http://www.ncbi.nlm.nih.gov/pubmed/22160046

You would think if the immune system has been comprehensively reset that results would be better in the mid to long term.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Re: Gibbledygook's stents

Postby CureOrBust » Fri Jan 06, 2012 5:33 pm

Both these are "reboots" using autologous stem cells. Could they simply be re-introducing the disease?
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Re: Gibbledygook's stents

Postby lyndacarol » Fri Jan 06, 2012 7:22 pm

Plasmapheresis (plasma exchange) is often done on people with MS who have not responded to conventional therapies. Any improvement is temporary. This leads me to believe a major contributing factor is in the blood.
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Re: third trimester stabilization

Postby gibbledygook » Thu Feb 02, 2012 8:18 am

At last, the third term stabilization has kicked in. I have 18 days till a planned c-section and I cannot wait!
Here's a pdf chart of progress so far post various venoplasties:
https://acrobat.com/#d=A-fBt9wvYUw9HyTq6d3Sww
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Re: Gibbledygook's stents

Postby cheerleader » Wed Feb 08, 2012 5:49 pm

glad you've finally reached some stabilization, Gibbs!!! Will be thinking about you on the 20th.
Here's to a safe delivery and a beautiful new baby :)
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Gibbledygook's stents

Postby gibbledygook » Thu Feb 16, 2012 9:07 am

Thanks Cheereo, unfortunately the stabilization was very brief and I've now suffered brand new sensory deficits in my left hand and renewed sensory deficits in my right hand. And my walking is really,really hard.

But then one likely won't feel better in the 3rd term if you're having a girl as the HCG carries on increasing and with it vascular permeability:

Am J Obstet Gynecol. 1975 Jan 15;121(2):238-41.
Serum human chorionic gonadotropin and progesterone patterns in the last trimester of pregnancy: relationship to fetal sex.
Boroditsky RS, Reyes FI, Winter JS, Faiman C.
Abstract
Concentrations of human chorionic gonadotropin (HCG) and progesterone were measured in the peripheral sera of 101 normal pregnant women between 25 and 41 weeks' gestation. HCG levels rose significantly with advancing gestation in the 43 female-bearers (r equals 0.516, p less than 0.001), whereas the 58 male-bearers showed no change (r equals 0.168, p greater than 0.1). Mean HCG levels were significantly higher in female- than in male-bearers (10.7 plus or minus standard error 1.0 versus 8.0 plus or minus 0.9 International Units per milliliter; p less than 0.05). Progesterone levels rose significantly in both female- and male-bearers. The calculated regression lines and mean levels (female-bearers 9.1 plus or minus 0.5; male-bearers 9.8 plus or minus 0.4 mug per deciliter) were not significantly different. There was no correlation between HCG and progesterone levels in either sex or in the entire group independent of gestational age. It is postulated that the lower HCG levels observed at term in male-bearers may result from an inhibitory influence of the higher progesterone and/or androgen concentrations in the male umbilical arterial circulation.
PMID: 1115129 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/pubmed/1115129

However HCG should reduce towards the end of the 3rd term, thus supporting vascular integrity.
Scand J Clin Lab Invest. 2007;67(5):519-25.
Human chorionic gonadatropin (hCG) during third trimester pregnancy.
Edelstam G, Karlsson C, Westgren M, Löwbeer C, Swahn ML.
Source
Department of Obstetrics and Gynaecology, Karolinska University Hospital at Huddinge, Stockholm, Sweden. greta.edelstam@karolinska.se
Abstract
OBJECTIVE:
Separate reference values were recently established for routine blood samples during last trimester pregnancy. Previously, these were based on blood samples from healthy men or non-pregnant women. Normal changes in variation in the levels of steroid hormones in the last weeks of pregnancy before delivery are also incompletely investigated. This study of the preterm hormone levels was carried out in the search for events leading to increased contractility that might occur in the predelivery weeks and potentially influence the initiation of delivery.
MATERIAL AND METHODS:
Blood samples during pregnancy weeks 33, 36 and 39 as well as 1-3 h postpartum were collected from pregnant women (19-39 years, mean age 30) with at least one previous pregnancy without hypertension or pre-eclampsia. All women (n = 135) had had a vaginal delivery and spontaneous start of labour. The blood samples were analysed for serum hCG, oestradiol and progesterone. Postpartum, the values were retrospectively rearranged to correspond with the actual week before the day of delivery.
RESULTS:
During the last trimester of normal pregnancy, a gradual increase was found in oestradiol (median 45980 to 82410 pmol/L), progesterone (median 341 to 675 nmol/L) and a gradual decrease in hCG (median 31833 to 19494 IU/L). Furthermore, a significant (p<0.03) decrease in hCG was found from the third to the second week before delivery, while oestradiol and progesterone continued to increase.
CONCLUSIONS:
Hormone levels during third-trimester pregnancy have not previously been systematically investigated. Recent data suggest that hCG may have a role as an endogenous tocolytic in normal pregnancy by directly promoting relaxation of uterine contractions. In the present study a significant decrease in serum hCG level was found 2-3 weeks before the spontaneous start of labour. This might contribute to increasing the contractility in the uterine muscle and gradually initiate the onset of labour.
PMID: 17763188 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/pubmed/17763188
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Re: Gibbledygook's stents

Postby cheerleader » Thu Feb 16, 2012 11:29 am

A girl!!! I never had a daughter....and never realized the affects of hCG. Wow.
You are so close to delivery, Alex. Hoping that the birth and recoup will go well, and your body will recover some from all the swinging hormone levels. Thinking of you,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Gibbledygook's stents

Postby ErikaSlovakia » Fri Feb 17, 2012 12:44 pm

Gibbledygook, thinking of you as well!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Re: Gibbledygook's stents

Postby gibbledygook » Thu Mar 29, 2012 9:56 am

Emily arrived all safely as planned. She was 7 pounds and 10 ounces. She is a very calm and quiet baby.

I used a Zimmer frame for several weeks after the C-section and sometimes my leg is still so stiff in the mornings that I use the cane indoors but my walking and left hand deteriorations have improved significantly. Here's my update for Professor Dake and a new chart:

I'm now 5 weeks post C-section and my bladder control and night spasms have improved very significantly. I now no longer need the toilet at night and have not suffered from night spasms for about 4 weeks at all. This is the best the night spasms have been since they started in 2004. The brand new sensory deficit in the left hand has attenuated but is still there whilst the right hand has reverted to normal, however I think there is new motor dysfunction in the right arm as it has felt quite weak lifting glasses. The walking remains very poor as does the spasticity affecting the right leg but both have improved since the pregnancy, however I very much need the cane and from time to time still use the Zimmer frame provided to me after the C-section. I can walk about 50 meters with the cane on my own but have so far not ventured further alone for fear of getting into trouble. I am very blessed to have a maternity nurse and full time nanny take care of the children. I realise now that much of the data on pregnancy and MS is skewed by virtue of the fact that most women with MS who continue to term are likely to have a much milder form of MS than I do with an EDSS of 6.5. Consequently data derived from pregnancy studies should be seen with this skew in mind.

https://acrobat.com/#d=UiN2v-ISIDvN-tQFK5JGNQ
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Re: Gibbledygook's stents

Postby NHE » Thu Mar 29, 2012 10:36 pm

gibbledygook wrote:Emily arrived all safely as planned. She was 7 pounds and 10 ounces. She is a very calm and quiet baby.


Congratulations!
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Re: Gibbledygook's stents

Postby gibbledygook » Tue Jun 12, 2012 1:23 am

latest chart, slowly improving from pregnancy but severe walking deterioration has not changed much.https://acrobat.com/#d=da9HAoJ4-yhVvCG0G8aE1w
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Re: Gibbledygook's stents

Postby gibbledygook » Mon Jul 09, 2012 8:18 am

Here's my latest chart. The walking has improved a bit and I no longer need a brace on my left knee but I'm still much stiffer than before the pregnancy.
https://acrobat.com/#d=EqY6q1nu4X1zmCjbc7rHhw
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Re: Gibbledygook's stents

Postby gibbledygook » Thu Jul 26, 2012 7:52 am

Wow! I'm back from Brooklyn and where I was seen and treated by the fantastic Professor Sclafani. But my treatment was pretty hardcore when I had only really expected a bit of ballooning as was done in Edinburgh under Doctor Reid. In fact I had both jugular valves ballooned and the right jugular has a refractory septum. I also had ballooning of the azygous AND two stents inserted for the nutcracker syndrome. Unfortunately thus far my symptoms remain very much the same to slightly worse or rather different. My right leg feels very odd now whilst I have quite a lot of lower back pain where the stents were inserted. I'm going to leave my chart updates for a month or so to see if the symptoms settle down as if all the ballooning and stenting remain patent then the blood flow will have altered dramatically. :-|
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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