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1  Hoito / Lääkitys / Re: Tecfidera
 Pvm: 15.08.2019 - 11:12:05 
Keskustelun aloitti Gwbh | Kirjoittaja eielri  
Moikka. Pähkäilen tässä uskallanko enää jatkaa Tecfideran käyttöä, kun lymfosyytit olleet laskusuuntaiset heti lääkkeen aloituksesta lähtien. Olen käyttänyt Tecfiderraa nyt n. 9 kk ja ekassa kontrollissa arvo oli 0,68, tokassa 0,55 ja nyt elokuussa 0,41. Olen jättänyt soittopyynnön lääkärille. Lisäverikokeeseen pitäisi mennä kuukauden päästa, mutta uskallanko odottaa siihen saakka ja jatkaa lääkkeen käyttöä normaalisti.

Mulla on ollut huonoja kokemuksia aiemmista lääkkeistä, kun Betaferon aiheutti mulle maksatulehduksen ja olin 2 viikkoa sairaalassa ja seuraavat 2 vuotta lisälääkityksillä. Copaxone puolestaan aiheutti anafylaktisen shokin parin vuoden käytön jälkeen. PML ei nappaa sitten yhtään, vaikka riski olisikin tosi pieni.

Mun MS on muutenkin ollut tosi lieväoireinen. Kohta 15 vuotta diagnoosista ja mitään elämää suuremmin haittaavia oireita ei ole, joten vahvasti alan tulla siihen tulokseen, että lopetan lääkkeiden käytön kokonaan.

2  Hoito / Lääkitys / Ocrevus aloitettu
 Pvm: 15.08.2019 - 11:04:10 
Keskustelun aloitti Haikara | Kirjoittaja Haikara  
Kirjoitin aikaisemmin Diagnoosi-osioon ja pohdin silloin uskallanko aloittaa Ocrevus-lääkityksen ppms:ään.

Päätin aloittaa lääkityksen kun tauti tuntuu aktiiviselta ja neurologi sanoi että se erittäin hyvin siedetty. Lääke annetaan tiputuksena sairaalassa.

Sitten juostiin turvakokeissa, sain pneumokokkirokotteen ja kävin papassa. Ensimmäinen annos (kaksi annosta vuodessa) annetaan kahdessa osassa. Sitä edeltävästi annetaan esilääkityksinä kortisonia, vatsansuojalääkettä (esilääkityksen esilääkitys  Silmänisku) paracetamolia ja antihistamiinia. Lopuksi vielä EKG. Tässä vaiheessa verenpaine oli jo kivasti koholla. Tiputus alkaa erittäin hitaasti ja nopeutta lisätään 30 min välein.
En missään vaiheessa tuntenut mitään sivuoireita tai muita tuntemuksia tiputuksessa. Tiputusreaktiot ovat kuitenkin melko yleisiä lääkkeellä.
Toinen puolikas annoksesta sujui tiputuksen osalta yhtä hyvin ja olo on ollut koko ajan sen jälkeen hyvä.

Sen huomasin noin viikko sitten että lymfosyytit taitavat olla melko alhaalla koska huuliherpes yritti yllättää. Kävin apteekissa hakemassa siihen lääkityksen, mutta herpes ehti hävitä sillä välin. Voin kyllä kuvitella että se saattaa ilmaantua uudelleen.

Nyt on kevyempi olo että kaikki on mennyt tähän saakka hyvin ja toivon että Ocrevus myös auttaa hillitsemään taudin etenemistä ja kenties jopa kohentamaan vointia. Neurologi oli myös tämän asian suhteen luottavainen  Pyöritä silmiä

3  Yleinen / MS-diagnoosi / Re: PPMS-diagnoosi ja Ocrevus
 Pvm: 15.08.2019 - 10:48:18 
Keskustelun aloitti Haikara | Kirjoittaja Haikara  
Mukava kuulla että rituksimabista on ollut sinulle apua.

Olisi mukava kuulla miten tautisi on muuttunut/edennyt viiden vuoden aikana sen jälkeen kun sait diagnoosin? Saisin näin hiukan näkökulmaa ppms:ään kun se on minulle kuitenkin uusi.

Kirjoitan Ocrevuksesta Lääkitys-osioon hiukan kokemuksiani. Kyllä, otin vastaan tarjotun lääkkeen.  Hymiö

4  Tutkimus / Tutkimus / Re: Krooniset bakteeri-infektiot
 Pvm: 13.08.2019 - 00:10:19 
Keskustelun aloitti HopeSprings | Kirjoittaja HopeSprings  
How do ancient viruses cause MS and other neurological diseases?

https://www.medicalnewstoday.com/articles/325718.php?type=medical-news

Ancient viruses have left behind traces in our DNA. Researchers believe these contribute to neurological conditions. Could inhibiting our viral passengers pave the way for future treatments?

Ancient viruses link to neurological conditions
What links neurological conditions and ancient viruses?

Transposable elements, which scientists also call transposons or jumping genes, are stretches of DNA that harbor the ability to move around our genome.

Scientists can trace back one type of transposon — human endogenous retroviruses (HERVs) — to ancient retroviruses that inserted themselves into the human genome millions of years ago. HERVs make up about 8% of our DNA.

Some HERVs hold crucial functions during processes such as embryonic development. But most HERVs lie dormant, silenced by DNA modifications.

Yet, in a recent review article in Frontiers in Genetics, researchers from Heinrich Heine University in Dusseldorf, Germany, detail how some HERVs may be reactivated and wreak havoc in our brain and central nervous system.

HERVs in neurological diseases

Back in 1989, Hervé Perron, then at the University of Grenoble in France, was the first to identify the presence of viral particles in cell cultures isolated from the cerebrospinal fluid (CSF) of a person with multiple sclerosis (MS). He later discovered that these originated from a transposon called HERV-W.

Activation of this dormant HERV results in an immune reaction. HERV-W envelope (ENV) RNA and protein are present at increasing levels in the serum and CFS of people with MS, but only rarely in those without the condition.

"Linking this HERV reactivation to autoimmune attacks in MS, it was found that HERV proteins can trigger an immune response against myelin, which triggers MS-like disease in mouse models," explains Patrick Kuery, a professor of neurodegeneration and senior review author.

Several triggers can reactivate HERVs. One of them is infection with common viruses, such as the Epstein-Barr virus that causes infectious mononucleosis, and other members of the herpes virus family.

How childhood viral infections may later drive multiple sclerosis

Viral infections during childhood leave lasting marks in the brains of people with MS.
Research also suggests that immune system mediators and environmental factors, such as diet and drugs, can switch HERVs back on, although there is limited evidence at this point.

MS is not the only neurological disease where scientists suspect HERV involvement. A number of studies have implicated reactivation of HERV-K in amyotrophic lateral sclerosis (ALS), a form of motor neuron disease.

When it comes to schizophrenia, the case is less clear.

"HERV proteins have been reported to increase expression of schizophrenia-linked genes in cultured human brain cells," explains Kuery. "However, studies on schizophrenia [patients] show inconsistent changes in HERV expression in blood, CSF, and postmortem brain tissue compared to healthy controls."

Can deactivating HERV improve MS?

In MS, the immune system attacks myelin, the protective layer that coats many neurons in the central nervous system.

Repairing this myelin damage by allowing the cells in the CNS to remyelinate neurons may prove an effective strategy to treat MS.

Since identifying HERV-W in MS patients, Perron co-founded the pharmaceutical company GeNeuro and developed a monoclonal antibody called GNbAC1 that targets the HERV-W ENV protein. Scientists are currently testing the antibody in clinical trials.

In a recent paper published in Proceedings of the National Academy of Sciences of the United States, Kuery, Perron, and colleagues dug deeper into the mechanism that links HERV-W to MS.

The team found cells that contained the HERV-W ENV protein in close proximity to neurons in brain tissue of MS patients, particularly in areas that contained chronic and acute MS lesions.

Dr. Tobias Derfuss, a professor in clinical neuroimmunology at the University of Basel in Switzerland, was a principal investigator of one of the clinical trials investigating the use of GNbAC1 in MS and a member of the steering committee for a further trial.

Writing in Therapeutic Advances in Neurological Disorders, Dr. Derfuss comments: "This treatment approach of GNbAC1 and the concept of a HERV-associated pathophysiology in MS remain controversial."

He explains that the results of the clinical trials investigating GNbAC1 for the treatment of MS indicate that the antibody does not prevent the immune system from attacking myelin, meaning it does not prevent MS.

The antibody may, on the other hand, kickstart remyelination.

   "Pharmacodynamic and imaging data do not reveal any immunomodulatory effects of GNbAC1. MRI changes during a phase IIb study with GNbAC1 are compatible with remyelination."

MS is a complex disease, and scientists do not fully understand the biology of HERVs. A HERV-modifying therapeutic may prove to be a promising treatment for people living with MS, but its true potential remains to be seen.

5  Yleinen / MS-diagnoosi / Re: PPMS-diagnoosi ja Ocrevus
 Pvm: 11.08.2019 - 11:39:03 
Keskustelun aloitti Haikara | Kirjoittaja nagubo  
jatkan vielä vähän: rituksimabi on ollut suht hyvä. tosin en tiedä oikeasti, että paljonko se hidastaa sairauttani. mutta kun nyt saan sitä kerran vuodessa tiputuksena niin vointini paranee, jaksan pikku hiljaa vähän paremmin seistä töissä ja silmien aamuväreily loppuu, samoin varpaiden hermosärky.. rituksin on siis kokeellinen lääke. tarkoitettu imukudossyöpään eli myrkkyhän se on. tuhoaa cd19 - valkosolut. muistaakseni ocrevus on rituksinista parempi versio. jos muistan oikein, eli kyllä suosittelen kokeilemaan sitä. mulle ei tule tiputuksesta myöskään mitään oireita vaan olo on ihan hyvä. ensin sain sitä puolen vuoden välein ja se oli mulle hyvä, voin paremmin. mutta nyt tosiaan vain vuoden välein.

6  Yleinen / MS-diagnoosi / Re: PPMS-diagnoosi ja Ocrevus
 Pvm: 11.08.2019 - 11:25:57 
Keskustelun aloitti Haikara | Kirjoittaja nagubo  
hei,
minulla myös todettu ppms n. 5 vuotta sitten. alkanut aika samoin oirein kuin sulla. tosin ihan aluksi oli päänsärkyä oikealla puolella päätä, aamuyöstä alkoi ja tuntui aivan kuin "turvottaisi" särkien oikea puoli kallostani vain yhdestä kohtaa . en voinut jatkaa nukkumista makuuasennossa vaan pinosin tyynyjä ja yritin nukkua lähes istuen.
hoitoa ei luvattu!ensin..mutta sitten kokeiltiin rituksimabia.

7  Tutkimus / Tutkimus / Re: Rokotukset eivät lisää MS riskiä
 Pvm: 03.08.2019 - 00:12:06 
Keskustelun aloitti HopeSprings | Kirjoittaja HopeSprings  
Measles a known unknown

https://multiple-sclerosis-research.org/2019/07/measles-a-known-unknown/

I was called to casualty to assess one of my patients with MS who was on natalizumab. She had been admitted with a temperature, confusion, seizures and a generalised skin rash. Within thirty minutes of seeing her, she went into status epilepticus and had to be sedated, intubated and admitted to ITU. Within 72 hours she was dead. At post-mortem, she had a measles pan-encephalitis. Four days before presentation she had unknowingly come into contact with a friend’s child who had measles. The friend was a staunch anti-vaxxer who believed that the measles vaccine caused autism and would corrupt her child’s immune system.

The above scenario is fictitious, but could happen, or more likely will happen sometime in the near future. This is a ‘known unknown’.

Things have a tendency to happen in threes; I experienced two today let’s hope the third remains science fiction.

(1) As I left home this morning on my daily commute to Whitechapel I finished listening to an Audm podcast “FEAR, MISINFORMATION, AND MEASLES SPREAD IN BROOKLYN” by Amanda Schaffer (Wired,  24-06-2019); scary stuff about the real impact of the anti-VAXX campaign on residents in Brooklyn, New York.

(2) I followed this by reading a review about measles in the latest NEJM (Strebel & Orenstein. Measles. N Engl J Med. 2019 Jul 25;381(4):349-357), which reminded me of medical school and my time on the medical wards in South Africa.

I then had flashbacks to my days as a neurology registrar in South Africa seeing and managing many patients with SSPE (subacute sclerosing panencephalitis) a relatively rare, but fatal, complication of measles infection.

More recently there was a fatal case of measles inclusion body encephalitis presented at our Association of British Neurologists meeting; tragically this young woman had not been vaccinated against measles.

Why is this important? We are living through a measles epidemic. The anti-VAXX campaigners have convinced enough parents over the last two decades to not vaccinate their children against measles, mumps and rubella (MMR). Once a certain proportion of the population is not immune to measles, so-called herd immunity becomes ineffective; i.e. the shield offered by a population of people immune to measles is too porous to isolate susceptible people from wild-type infection in the community. In fact, vaccination works because of herd immunity.

Image from BioNinja

Another factor to consider is that unvaccinated people also get MS. If you are unvaccinated and have not been exposed to the wild virus you are now at relatively high-risk of acquiring measles as an adult. If you then decide to go onto longterm immunosuppression to treat your MS you are putting yourself at risk of serious complications from these infections, in particular measles. In addition, once you are on a longterm immunosuppressive therapy you can’t be vaccinated with the MMR vaccine as it is a live attenuated vaccine.

Measles is also a neurotropic virus and hence seeds to the brain. If you are on natalizumab and contract measles you will be in serious trouble. Natalizumab works by blocking trafficking of lymphocytes to the CNS and hence will stop your lymphocytes detecting, attacking and clearing the virus from the brain. The consequences of an unimpeded measles virus infection of the brain will be in all likelihood be lethal. This is a similar scenario to what happens with PML. Although natalizumab is being fingered here there is a risk will all of our immunosuppressive DMTs.

Because of this known unknown, I am proposing that all MSers are screened at baseline, i.e. before initiating a maintenance immunosuppressive therapy, to make sure they have immunity to MMR. If they are antibody negative they should be offered the option of receiving the MMR vaccine, or at least the individual components of the vaccine if they are still available in your country, to make sure they are immune to these viruses before they start treatment with the DMT concerned.

I sincerely hope my case scenario remains fiction and things don’t have to happen in threes.

********
Koska rokottamattomat lisäävät kuoleman riskiä MS-potilailla, jotka ovat immunisuppresiivisella lääkityksellä, niin ennen lääkityksen aloittamista olisi huolehdittava, että kaikki rokotukset ovat kunnossa.  Itse olen sairastanut tulirokon, ja luulin kuolevani. Äitini myös luuli, että kuolen. Se on vakavasti otettava sairaus.

8  Tutkimus / Tutkimus / Rokotukset eivät lisää MS riskiä
 Pvm: 02.08.2019 - 14:21:31 
Keskustelun aloitti HopeSprings | Kirjoittaja HopeSprings  
Vaccinations not a risk factor for multiple sclerosis

https://www.sciencedaily.com/releases/2019/07/190731113010.htm

July 31, 2019
Data from over 12,000 multiple sclerosis (MS) patients formed the basis of a study by the Technical University of Munich (TUM) which investigated the population's vaccination behavior in relation to MS. It showed that five years before their diagnosis, MS patients were statistically less likely to receive vaccinations than comparator groups. Consequently, there was no positive correlation between vaccinations and the development of MS.

MS is now thought to be a neurological autoimmune disease in which the immune system attacks the brain and spinal cord. It is most likely to occur in young people under the age of 40. Vaccinations are often mentioned as a possible risk factor for MS. Professor Bernhard Hemmer, director of the Neurology Department of the TUM hospital, Klinkum rechts der Isar, teamed up with scientists from the Medical Department and the Bavarian Association of Statutory Health Insurance Physicians (KVB) to analyze a large KVB dataset representative of the general population. The data covered over 200,000 individuals, including more than 12,000 MS patients. The study was published in the Tuesday, July 30, 2019, issue of Neurology, the medical journal of the American Academy of Neurology.

Lower vaccination rates among MS patients

The researchers found that five years before being diagnosed, individuals who went on to develop MS had received fewer vaccinations than those who did not develop MS. This applied to all the vaccines investigated: those against pneumococci, meningococci, mumps, measles, rubella, chickenpox, human papilloma virus (HPV), hepatitis A and B, tick-borne encephalitis (TBE) and influenza. The effect was particularly pronounced in the latter three cases: the control group had received significantly more vaccinations than the individuals who later developed MS.

"The causes are still a mystery. It may be that people perceive the disease long before they are diagnosed and therefore avoid putting additional stress on their immune system. Such effects are in fact evident in our data. Or perhaps the vaccines have a protective effect that prevents the immune system from attacking the nervous system. In any case, given the large volume of data analyzed, we can conclusively state that there is no evidence that recent vaccination increases the likelihood of MS or the onset of an initial MS episode," Alexander Hapfelmeier, lead author of the study, explains.

Effect not evident in Crohn's disease or psoriasis

The researchers also wanted to rule out the possibility that the results might be an underlying effect of chronic diseases in general. They therefore analyzed data from two other groups: patients with Crohn's disease, an inflammatory bowel disorder, and patients with psoriasis, a chronic skin disease. The vaccinations of these patients had also been recorded five years before their diagnosis.

Those patients, however, had received as many vaccinations as the healthy control group. "Thus, the results are not due solely to the presence of a chronic inflammatory disease, but to behavior specific to MS," Bernhard Hemmer says, adding: "We already know from other studies that MS sufferers show atypical behavior and medical history long before they are diagnosed. For example, they are more prone to mental illnesses and also tend to have fewer children. All this clearly indicates that MS is perceived long before any neurological symptoms appear. We therefore need to find suitable markers to diagnose the condition earlier. We see this as one of our most important tasks."


9  Tutkimus / Tutkimus / Re: Krooniset bakteeri-infektiot
 Pvm: 02.08.2019 - 00:31:19 
Keskustelun aloitti HopeSprings | Kirjoittaja HopeSprings  

Neuronal loss or dysfunction in patients with early Lyme neuroborreliosis: a proton magnetic resonance spectroscopy study of the brain.


https://europepmc.org/abstract/med/31076877

10 May 2019

Abstract
BACKGROUND:We hypothesized that since Borrelia burgdorferi causes systemic inflammation and infects the brain, it may lead to alterations in cerebral metabolism, as measured by 1H-magnetic resonance spectroscopy (1H-MRS). The purpose of our study was to determine whether 1H-MRS could detect brain metabolite alterations in patients with early Lyme neuroborreliosis (LNB) in normal-appearing brain tissue on the conventional magnetic resonance imaging (MRI).

METHODS:Twenty-six patients diagnosed with early LNB and twenty-six healthy volunteers as a control group have been involved in the study. All of them underwent routine MRI protocol using 3.0-T MRI scanner. 1H-MRS examinations were performed with repetition time (TR) = 2000 ms, and echo time (TE) = 135 ms. Single voxels were positioned in the anterior and posterior parts of the right and left frontal lobes.

RESULTS:We found a statistically significant decrease of the N-acetylaspartate/creatine ratio within the anterior part of the right and left frontal lobes (p ≤ 0.001 and p = 0.001 respectively) and in the posterior part of the right and left frontal lobes (p ≤ 0.001 and 0.031) in the patients with LNB.

CONCLUSION:A significant reduction in NAA/Cr ratio in comparison with the controls suggests the presence of diffuse neuronal loss in patients with early LNB.

******
Tutkimus koski alkuvaiheesa olevaa borrelioosia. Mutta myöhemmässä vaiheessa jos on plakkeja aivoissa? Syy voi olla MS-taudin tai borrelioosin. Vain asiantunteva radiologi pystyy erottamaan kumpi on kumpi. Näin minulle kertoi neurologi, joskaan ei Suomessa.


10  Yleinen / MS-jutut / Re: Psykosomaattistako?
 Pvm: 31.07.2019 - 15:34:17 
Keskustelun aloitti Anon123 | Kirjoittaja Anon123  
Nyt likvorin alustava tulos; muut vastaukset viitearvoissa, ainoastaan Li-leuk 4, jonka viitearvo<3

Eli ollaanko taas pisteessä nolla ettei vastaus kerro suuntaan eikä toiseen?